ANA Discussion Forum
General Category => AN Issues => Topic started by: klangel on November 21, 2008, 06:19:44 pm
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hi it's me again, kerri angel, been a real long time since ive been on the forum. in that time i have seemingly exhausted every avenue of ways to alleviate my numerous debilitating issues as a result of my near 18 hour translab surgery june 1 2005. apparently everything that could possibly have gone wrong did! i have visited doctor after doctor with not many good results or good reports and am wondering if it would not be better to just be dead. at least there would be some peace and no pain. i actually feel i could get used to it all if it just remained static but it doesnt. the multiple random noises in my head are indescribable at times as well as terrifying. im tired of the constant eye , nose mouth chin twitching the headache that never dissapears, seeing yellow circles on everything, the tooth and bone loss from the clenching and trigeminal neuralgia, the humiliation of falling down and needing assistance even to shower,the strange perception of small sounds, the lack of understanding what people are saying to methe choking randomly for no reason, the swallowing troublesand the general lack of ability to do the things i love. folks just dont get it either, this includes my own family. my disabilities are invisible and therefore im looked upon as a normal person. oh how i wish that were true!from everything ive researched ive come to the terrible conclusion that every one of my 12 cranial nerves on the left side have been mauled. i envision them as a ball of tangled wire. i currently go to counselling which i thought might help me to at least develop some strategies to deal with the frustration and sadness i feel as well as the anger but it so far has proved useless because my therapist cant understand it any better than anyone else. i came sooo close to taking my life yesterday that im getting frightened. i used to love my life so much and now i can honestly say i hate it. i cant read or write anymore for any length of time because of my eye. its really messed up. i cant tolerate smells because my nose is messed up. i cant exercize, ride a bike or take a nice walk because my ballance is messed up and i leak csf fluid out my left nostril. i cant even wear my partial because of all the atypical facial pain, bone loss and jaw clenching. i never get any good sleep because the noises and the eye evoked tinnitus wakes me at least 6 times a night. sometimes i can be down for the count in bed for weeks at a time. i currently take trileptal for the face pain and it works somewhat but not entirely i also got my regular doc to give me some xanax to try to alleviate the anxiety attacks i suffer due to the fear that when a "bad" noise comes it may or may not ever go away. i go to chiropractic, biocranial, massage therapy and lymphatic drainage which all help but its always shortlived. i feel as if i'm now certifiable and no longer have any control over my life. i certyainly have no independence.theres alot more but this is getting far too long winded. bottom line is does anyone out there have any suggestions? my current neurosurgeon says ill probably be a likely candidate for gamma knife within the next few years as some of the tumor was left behind to preserve my face but im afraid of anymore procedures and ive already been told that they cant fix my issues.i'm broken and cannot be fixed.so very desparate for peace and quiet! does anyone out there know of a way to deal? running out of time, kerri
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Kerri,
My heart goes out to you. I am so, so sorry that you are in such relentless pain. The fact that you have reached out shows you have a deep well of inner strength. You want to live. I pray that the human connection you need most comes soon, to take your hand and lift you out of this lonely place. I would never pretend to know what you are going through physically , but want you to know that I have been where you mentally are right now. I reached out like you and the help that I needed did come.
This is a wonderful forum and I am sure more compassion, wise words and support are headed your way.
If YOU TRULY FEEL YOU HAVE NO OPTIONS, THEN PLEASE GET TO AN ER OR CALL A CRISIS LINE.
They can help you out of crisis mode so you can move forward.
Please don't give up.
Tracie
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Oh Kerri,
I am so sorry that you are feeling so helpless when there has to be help out there for you!!! Where are you located?? I wish I could give you a big hug and let you know how much we care and want to help you!!! It sounds like your medical issues have overwhelmed you and what you are in need of is understanding and a willing soul to care for you! Please know that there are many people on this forum that are dealing with many of the issues that you are. I have not personally had any procedures yet so I can't help you with that but I want to extend a helping hand or direct you to someone who is close to you. Please let us help by telling us where you are. I will make a special place for you in my prayers that you will find some relief soon.
Jackie in Beaverton, Oregon
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Hi Kerri,
I am so sorry to see that you are in so much pain, pysicially and mentally and have to agree with Tracie, please do not give up -- getting to an ER or calling a crisis line is a great idea. They can and will help you. You say you are broken and can't be fixed, and while you have major issues and problems, I'm certain someone somewhere can help you. Life is too precious to just throw it away, whatever you are going through what you seem to need right now is emotional support. If you would like to talk, please PM me your phone #. Where are you located? I would be happy to try to help find someone who is medically qualified to try to help you if you let me know.
Hoping to hear from you,
Wendy
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Kerrie,
Please don't give up. Is there a local AN support group in your area? Can you begin there?
I can't even begin to imagine the pain that you've been going through and for such a long time, too. There are so many issue that you have? Let's begin with the CSF leak. Have you had that for 3 years? Can the surgeons patch that up?
As for your balance...Can you get physical therapy? It helped me alot. To prevent the falls, do you need a cane to help your stability? Or is it that you have trouble seeing because of issues with your eyes?
As for the bad noises you mentioned that don't allow you to get rest...can you drown them out with something like a pump from a fish tank. I used to have a small fish tank and found the sound of the pump very soothing.
As for the Drs. who can't fix you..how about changing Drs.? I'm sure there are other drs. that could help.
Whaterver you do, don't give up Kerrie. Hang in there. Others will chime in soon with other suggestions.
I'll add your name to my prayer list.
Syl
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dear tracie, wendy , jackie and syl, hey thanks for the quick response to my verbose post. there is no support group in my area. i think if i started one it might be good. i am in clarks summit pa. on the side of a mountain. i am pretty rural but very close to scranton. i actually contacted veda for some info. because anyone w/ vestibular disturbance would probably have alot in common. i just dont know how to find folks that are experiencing this same or similar thing. i wonder if ana would have a list?also there are money issues as most of you who collect disability know. thats why im here. i used to live on l.i n.y. at the time of my surgery but could not afford to stay there. transportation is frequently an issue. i dont drive anymore my poor husband has to bring me everywhere and he is also disabled due to neck injury suffered from an overturned truck accident in 2004. infact i was taking care of him when i got my diagnosis. my surgeons were at nyu in n.y. pretty much after the 9 days in the hosp and the removal of the stitches they really didnt have the time of day for me. i sought out my own balance therapy and went for six mos. i do use a cane all the time and when i have the "bad spells i use a walker. i also use a chair in the shower.i went to radnor pa and to philly to see some docs but they cant help. once those darn cranial nerves are dammaged they say they cant fix em.no one wants to even address the csf leak because its too small and too hard to find so i do biocranial treatments which slowed it down a great deal but never fully mended it. kinda get scared if im ever in the er w/ all those sick people. er and docs here are not good prospects. even they agree that i know more about this than they do!as for drowning out the noises, i cant because they are not static. they change all the time. ive got upwards of 27 now. some i call my "friendly noises" theres usually at least 2 or 3 of those all the time but others defy description and do not fit the technical definition of tinnitus. its almost like an explosion in an electronics factory! ha! as for praying ive mostly decided there either is no god, he just doesnt listen or hes vengeful and mean. i cant even go to church because of the noise there and recovery from social gatherings is long and arduous.i am very isolated. i do attempt social things for the sake of my husband because we were always very social people but it takes a huge toll on me.the last neuro otolaryngologist i saw was supposedly some big wig in his field and even he never heard of the noises i described as being an effect of an surgery.i go with all my pics and lists and i think they just dismiss me as being a nut job! very frustrating.and yes i do want to live but i want to have a reasonable qol. i guess ill just keep trying until i cant try anymore. i just fear that its coming closer and closer. btw hugs are great i get em every week from my massage therapist and my chiropractor theyre the best!
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Hi Kerri,
I am sorry to hear you are having so many troubles. Argh.
It occurs to me that you need a good night's sleep. Between the jaw clenching and the noises, you don't seem to get a chance. I think I would focus on getting something that would allow you to sleep well, whether it is over the counter, a prescription, or whatever it takes. Sleep is probably the best treatment for all those noises; it won't make them go away, but it will reduce them. Fatigue always makes tinnitus worse. There is not much to be gained by describing your noises to doctors; as far as I know, there is no cure for tinnitus, other than trying to get your brain to ignore it.
I have been a jaw grinder for some years, and find that using a night guard does help. When I wear it at night, the jaw muscles are more relaxed the next day, and less likely to grind away the next night. Both tinnitus and grinding are cyclical: they interfere with sleep and comfort, which in turn makes them worse, so they interfere more, etc. You have to try to break out of that cycle. I notice my tinnitus far more in the evening than in the morning, because I am getting tired again. So if you can break the cycle using pills, you can get back to a well rested state. Your body can heal better if it is well rested, so it is worth the effort.
Taking Xanax for anxiety should also help soften the tinnitus, and is probably a good idea, at least until you can sleep better. If you need to, don't be shy about seeking an anti-depressant to help you through the blues, either. Anyone in your shoes would understand why you might be experiencing some depression.
I don't know which of the medical conditions you describe can be addressed and which can't. For some of them, the best treatment may be getting healthier and better rested, and hoping that time will take the edge off. Various kinds of therapy may help specific issues, such as physical therapy for balance; a pain management or headache clinic for head pain; facial nerve and muscle therapy for the face.
I hope you decide to stick with it, that you find some ways to make it all more tolerable, and that you have a chance now and then to enjoy some good moments. It may not be as much fun as it once was, but there is still some joy left in your life that you have yet to experience.
Steve
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Hi Kerri,
{{{{{{BIG HUGS FOR YOU}}}}}}}
Wow did your email hit home. I did not expect the outcome that I had after surgery. I had facial paralysis so bad I had to close my part time business (owner and operator of a Salon )because I could not risk getting hair in my eye. I then started to think how could I go back to my job as a kindergarten teacher (honesty I thought I would scare children)?Would my husband still find my desirable? I felt like my life was over.
I slid down a slippery slope and became very depressed. I NEVER expected facial paraylsis, I was walking like a drunk, I couldn't hear out of my left ear, I have ringing in my ear so bad I think I am going crazy. Lots have said don't concentrate on it and it helps, I guess somewhat but mine is so loud I keep thinking I can't hear because of the ringing, which I know isn't true.
Anyway you know the drill ... I had a hard time coping. I laid in my bed curled in a ball and cried all day. My husband would call from work and ask how I was? I wish I could have said fine but couldn't, I told him I thought everyone would be better off if I wasn't here. I was not trying to get attention I really truly believed it.
I started taking anti-depressants and sitting out in the sun. I needed help to change my outlook. I started to only say positive things, even though I only thought negative. Then things started to look different... okay so there is a new me..I can't do everything I used to ... but I will fight and get stronger and I will not give up.
Why? Because I am a mother and a wife and they want and need me in whatever capacity. I want to see my children grow up, give them advice, listen to the highs and lows in lives, see my grandchildren (don't have any yet) and tell my children everyday how much I love them. I want to hug them tightly. I want to lay in the arms of my husband on a lazy Sunday morning and feel the warmth of his body.
Kerri you need to fight, don't give up. It is hard to see clearly when you are in the middle of a muddy puddle. It will clear and life will unfold how it should. You can do this. Concentrate on small things... break your life into bite size pieces and concentrate on what is good. You are feeling overwhelmed and rightly so. Start making a list of things you are happy for and this will help to change your thought process. I understand, it sucks tons but if you keep telling yourself how much it sucks it will suck. Tell yourself everyday that your body is a wonderful healing machine and how much you love yourself, you will be amazed at how positive talk will help you improve. When someone asks how you are doing just say trying to get stronger everyday. Tell your therapist everything...lean on him or her. Push yourself everyday, just a little, and be extra kind to yourself. Fuel your body with healthy food, take vitiamins and exercise the best you can... Oh and certainly enjoy a treat you are worth it.
Okay you have just been mommed. We are here for you... read some threads.. you are not alone... talk to us and get the help you need.
Michelle ;D
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dear michelle, thanks for mommin me! everything you said is true and i also have kids who need me. my daughter that lives with me now is only about to turn 17 so she does need her mom. its been real tough on all my kids. i have 2 and my husband has 2. his dont live with us but have felt the pain of all this and my 2 actually had to go live with their crappy father for 2 years because of this. my son is going to be 21 in march but he was only 17 when all this happened. and my daughter was 14. we had to sell our home and move out of the state to survive financially. that disability system is not easy!my girl did eventually move here with me but both my kids have issues because of me not being able to be a mom for so long. i feel as though ive cheated them in a way.im still not a whole person nor will i ever be. but on the good days i do try to concentrate on the many good things in life. and i also try to cry alone so as not to subject anyone to the despair i feel. anyway thanks for momming me i think i need that. i dont have my mom anymore.she died in 2000 of breast cancer. kinda good that she didnt have to see all this. i am currently facing a breast mri myself which is scaring me also but thats another storyim sure it will be ok and if it isnt theres really not much more anyone can do to me anyway lol! im glad i got back to the forum. people like you make me feel stronger. thanx! and also real happy you have such a great outlook. kerri
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Kerri,
An unresolved csf leak can cause debilitating headaches as well as put you at risk for meningitis. You have got to find a doctor to address this issue for you. I hope you find some relief soon. This forum is a great place for information and support. Please, please, please take care of yourself.
Hugs,
Capt Deb
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hey capt deb, yeah i know i have a headache 24/7 that no amount of drugs will touch and am also afraid of menegitis but i really dont know what to do about it. sprung the leak the day after surgery and had all that nasty spinal tap stuff with the outlet in the back and the machine hooked up and all and they said it was resolved but after i was home awhile it started up again. my docs were far away and they did not seem the least bit concerned then i was going through severe financial crisis and had to concentrate on selling my home waiting for ssd and moving so whenever i did leak i would just walk around with a paper towel hanging out my nose. finally after i had moved to pa and became eligible for medicare cuz they make you wait 24 months to see a doctor i went right away to a neurosurgeon. he obviously knew nothing about an s but gave me a little cup and said to leak into it. haha. i told him it is sporadic and only happens under certain circumstance and actually asked him if he had a mop so i could mop his floor to leak! i guess he thought i was crazy and sent me packing. soo i tried again with a neurosurgeon in philly ( very far from my home) and he sent me to a prominent neuro otolaryngologist with this among other concerns (also philly) and he told me this would have to be dealt with by the neurosurgeon! oh yeah back to square one! i asked him if it could be dangerous even if it was small and without so much as an inkling of emotion he said yes!well im not too sure where to take it from here. i cant keep going back and forth to philly its about 175 miles or more away for a pat on the back and a hearty handclasp and a sorry but we cant help you. fortunately its winter and it slows up when its cold. plus ive really cut it down to a minimum by having biocranial treatment. what i was told was that because its so small it would be too hard to find! i dont think anyone wants to try and ive run out of doctors within my grasp!
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Kerri, Does your nose just run esp when you are warm and or active or does it drip out in drips when you hold your head over for a period of time and it drips like a faucet. Just running is not always a CSF leak. it being a drip,drip drip when you head is hung over is more likely. I had a CSF leak with more surgery. I do not do the drip bit but it runs alot when I am active when it is warm. My surgeon only says it will do the drip way to be a CSF leak.
it has been discussed by many of how the nose runs easy so am just curious if yours has been proven to still be CSF. You are thru more than enough and do need what ever help you can get. Cheryl R
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Kerri,
I am so sorry. I don't blame you for feeling the way you do, given how you feel. There are good doctors out there--you just have to keep looking. Pain management docs can be excellent. I am also trying to find the right doctor to help me deal with the after-effects of surgery (mine are mostly trigeminal issues) and if you look at some of my other posts you'll understand that I understand a little bit of what you are going through. Chronic anything is not good and it sounds as if you have received a lion's share of problems. Keep doing the things that do help--even if the relief is short-lived at least it's there.
Hang in there,
Marci
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hey cheryl, nope no one has ever proven what it is. it drips like that when im gardening and just kind tickles and trickles when im moppin the floor lifting something or just get overheated. but its been alot less since ive been doing the biocranial which is a stretching of the duraafter i started biocranial treatment(and at the time we didnt know if it would make it worse ,better or stay the same) about a month in i noticed that every morn i would wake up with a clear dried film on the inside of my left nostril. i could actually peel it off like a wrinkly saran wrap. then that went away after about 3 months and now it only runs sporadically. so anybodys guess is good. ive been doing biocranial treatment for a little over a year now i go once a week in the beginning i used to go twice.i just wish whatever it is would resolve completely. and its only the left nostril. who knows?
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Hi, Kerri:
Your initial post was poignant and moving. Like so many others, I wish I could reach out and fix these problems for you, but of course, I cannot. Still, I'm glad you've chosen to visit the forums despite the terrible problems you're enduring. I hope we can be of some help. The medical profession has obviously been less than helpful to you, which is very unfortunate but not as uncommon as it should be. Please read and try to respond to and/or follow the suggestions you'll see here because some of our members have experience in these areas you're dealing with (CSF leaks, headaches, etc) and may be able to offer you something that works or at least point you in the right direction (to alleviate your pain). I regret that I don't have much real-life experience with these issues and cannot offer you words that might change your situation in any meaningful way. I can tell you that I consider you to be heroic in the way you've fought to retain your integrity of self during these past three years, struggling with these multiple, painful and debilitating post-op problems. I doubt I could handle this horrific situation with the kind of strength you've demonstrated. Frankly, your current state of frustration and sadness is completely understandable. Perhaps I can't fix this situation for you but I'll definitely have you in my prayers tonight and every night. I pray for relief for you as well as the strength to carry on in the face of extreme adversity. You're very worthy of our affection, virtual as it may have to be, and believe me, you have it....more than you can know. Please try not to despair, Kerri. People love you and need you. Remember that as with all things in life, this too will pass. :)
Jim
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hey marci, thanks so much for the kind words of encouragement . i am as most times constantly seeking new info and alternative relief strategies but to hear encouraging words helps alot.
and jim, i hardly know what to say except your eloquent message of hope made me cry ...only this time they were happy tears instead of the sad desperate kind. thank you so much. its really good to know someone understands and cares!
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Kerrie,
I went for a 5-mo follow up this past week. My problems are not as severe as yours or that of other AN patients. However, I do have some issues that I mentioned to my doc. She told me to keep doing what I've been doing because I'm one of the luckier ones. A bit disheartening, but no hard feelings because it's true. But I understand that even with medical help, I have to do my share to help resolve my issues. So that's what I'm doing.
Yesterday, under the topic of headaches, I came across a link that one of the forumites was kind enough to share with us. It links you to a manual for intractable pain. I found it interesting and found some info that could possibly help me. I hope you will find it helpful, too.
http://pain-topics.org/pdf/IntractablePainSurvival.pdf
Syl
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Hi Kerri,
Sorry it took so long to get back to you, but having a family, weekends can be busy and I also share the computer with my husband and kids. I see many people have looked in on you and offered you ideas for dealing with your problems and moral support, which I think has been sorely lacking in your life. I also spoke to Anita Prentiss from the ANA Support Group in Pittsburgh and she thought and the group in Reading is probably closer to you. The leader is Nancy Graffius and her phone # is 610-939-9114. I didn't have a chance to speak to her today, but perhaps if you call her and if the group is close enough, you can attend one of their meetings.
I only a short time to research things that can possibley give you some relief from your tinnitus and I realize you may be aware of most or all of them, but here they are:
1. Avoid caffine, alcohol and smoking
2. Do relaxation exercises - One I have always done when stressed out is I gradually relax my entire body, starting at my toes and working my way up to my head. I usually actually fall asleep before I'm done.
3. I came across something called a tinnitus masker in my research but don't have a clear picture of the cost, how to obtain one and if it is covered by insurance. I will keep looking. It is worn like a hearing aid and delivers low level sound directly into the affected ear to cover or disguise the noise bothering you. Since your tinnitus is not constant, something like this might be of more help than a white noise machine or fish tank
4. Other possibllities are
a. biofeedback
b. acupunture
c. Craniosacral therapy (don't know exactly what this is but will find out)
d. hypnosis
e. vitamins and minerals -- zinc, magnesium, ginko biloba, melatonin (this will also help you sleep) and B vitamins --- apparently there are no studies that prove these will actually help, but some people seem to think they do.
More information in the next few days -- in the meantime, hang in there and don't do anything rash. As I said they would, there are people on this forum who understand what you are dealing with and care about you and will support you. And as I promised I will see if I can find help for you in your area. I'm a little at a disadvantage not being really familiar with Pennsylvania, but will do what I can.
There is also an American Tinnitus Association and I am certain they can help you too. You can contact them at http://www.ata.org
Hang in there,
Wendy
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Hi, Kerri:
So very sorry to hear you are struggling. While I regrettably don't have any quick fixes to suggest, here are a few ideas:
1. I have found that taking niacin reduces tinnitus. It can cause a short-lived flush (for about 15 minutes) which some people find objectionable, but it does increase blood flow to the inner ear, which can decrease tinnitus. Beware taking high doses for an extended period of time, however, because it can cause nausea and damage the liver. I now take niacin only when the tinnitus is so pronounced that I feel I really need the relief.
2. I also find that eating a lot of steamed leafy green vegetables daily cuts my tinnitus volume by about 90%. I presume it's because they are high in vitamin A, but whatever the reason, it works for me!
3. If your current doctors cannot improve your condition, get another doctor! There's always hope when other doctors -- perhaps with more experience with your specific issues -- are available.
4. Consider trying something completely different, such as seeing a naturopathic doctor, accupuncturist or a doctor of Chinese medicine. I really can't say if this would help, but as it sounds like you're at your wits' end and haven't yet found relief, it's worth trying something really different to see if it will help. If you do go to an alternative-medicine doctor, though, just make sure they have a good reputation. Maybe ask people at your local health-food store if there is anyone in your area that has a great track record of helping people with serious medical problems, especially those involving the nervous system.
5. Please make sure you spend some time every day or so outside. Being shut indoors for days on end can cause depression even in people with no medical problems to deal with.
Please stay in touch with this forum. We are the people who understand most what you are going through, as everyone here has at least one of the same -- if not multiple -- problems that are challenging you. We all wish you the best and hope you can find the bright side of things and bounce back.
Best wishes,
Tumbleweed
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To KLANGEL
I saw your original post, clearly you have some major issues there
- you must be very worried.
On another site there was a guy who had two major OPs
- the outcomes put him in a mental hospital for six months
Amazingly even the experianced staff there thought they
could "talk" him out of it....
So lets talk practical for a moment
Many changes to your body/balance system
Generally its best to accept the changes
- work around them, then retrain the new system
(I was left in a wheelchair post OP
- but now I can play 36 holes unassisted)
So quiet/safe balance exercises
anything you enjoy - Yoga, Ballet, light gym ?
In your own time, at your own pace.
Early days it will tire you
- but it gets better and better
Within your day-to-day life I think you are trying
too hard at things that now much changed
I simply avoid the busy places
- where my hearing will make life complex
I tend work and talk one2one - when its quiet
I have an amplified phone for work use
But I dont do the "old" job
(lets face it if I were to collapse on the Paris ring road
life might get very complicated...)
I also did some lipreading classes
- helps alot with reduced hearing
Beyond this look at the stressors
- the causes of the stress
Look at ways to reduce them
Finally REST
The new "overloaded" system gets tired quick
I have found - you set aside a quiet place
to sit - EYES SHUT for about ten minutes
This is worth about 4 hrs sleep
Given whats happened I am suggesting
maybe 95% recovery is possible
but it will take time
Good Luck in your recovery
Best Regards
Tony
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Kerri,
I saw your post the other day and was kind of blown away. I felt sad for you, powerless to help, and reaffirmed that we all have our issues here, some worse than others.
I am glad to skim through the responses and see that the wonderful people who come to this site have openned their arms and hearts to your plight. I can't imagine have gotten through this past year without the support of these people. I think it's always a good idea to start by counting your blessing, and i can see that in the many responses and good advise, there is much to count here.
I like to think of myself as one of the luckier (not lucky, but luckier) ones who had surgery. This is coming from someone who sits here with a half paralyzed face! I am 39 and, despite knowing the risks, really thought i would escape this. I also have a baby (toddler now), who i kissed goodbye the night before surgery, so desparate to see again when the surgery was over. I made it, but it was not easy, and there are still challenges.
I can't begin to know all the things you are going through and hope that the advise here helps on some fronts. I can only say that there are things we can control, and things we cannot. There are also things we can fix a little, and those things can help a lot.
I hope that you can push forward to get the help and care that you need, it sounds challenging, but you are obviously a survivor, having made it this far through so much. I too have tinnitus that sometimes is soooo noisey, and other times i dont even notice. I will try to eat more leafy greens (as someone here suggested), i should do this anyway!! I already avoid, as best i can noisey places that set it off, but sometimes i cannot (like i have to ride the subway twice a day to get to work). In these times, i get a book and just try to lose myself from the noise and looks from people who stare because i am wearing an eye patch and my face does not move on one side. In many ways, you can make your own reality, you have the power. A good attitude and coping strategies can go along way.
Now, pain is another thing, and something i really haven't much problem with and I don't live in the US so i can't speak for the health or social systems. I hope you can get much needed help here.
And i am sorry to hear of the struggles you have faced as a mom, this must be so tough, but i hope that one day (sooner rather than later) you will be on the other side of this and a happy ending will prevail.
good things to you.
Trish in Toronto Canada
Good luck to you, do what you can to help yourself and don't give up.
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wow! i can hardly believe all the supportive response and ideas that all of you have provided on this forum. i have tried alot of the suggestions, continue to implement some of them (especially the alternative medicine) and will certainly take it that extra mile in order to fall in love with my life once more. thanks for being there. i dont even know why i stopped being involved with this forum. probably the house renovation and my daughter moving in. but im glad to be back. i think its keeping me saner.i contacted the support group coordinater in hopes that i will be able to form a support group in my area as none exist here. ill lay dollars to doughnuts that there are folks here feeling as misunderstood, frustrated and isolated as i do. it would do us a world of good im sure if only to vent. as for the supplements i take them as regularly as i can.(swallowing issues and the liquid versions are just too expensive) cant do the niacin thing though because of liver disease. i have to be careful.im going to stock up on the leafy greens though. i think i may check out the accupuncture as they offer it at the integrative med center i visit for my massage therapy, chiropractic, biocranial and lymphatic drainage treatments which btw do help somewhathopefully it will be covered by insurance otherwise i cant go. i really want to love life again like i used to and feel like im a productive person and not just a usurper of air that others could be using. my art is the only real thing that helps everything but got no place to work or store stuff. always on the back burner but not for long. i am now determined to find a place and a way whatever it takes! thanks for the inspiration! all of you. with grattitude and love, kerri
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Hi Kerri,
I thought the following exercises might help deal with your balance issues -- they are exercises I learned in PT and have helped me a lot. I started PT three weeks post-op and used a cane for about the first 10 weeks or so after surgery. I stilll have some balance issues but they are very much improved.
I don't have diagrams or a print out, but here are the exercises I've been doing for improved balance. I do three sets of each. If you need to hold onto something for support at first, rely on the least amount of support you can and eventually do these exercises without holding onto anything -- you can start with your eyes open and as the exercises become easier, try to close your eyes for the appropriate exercises:
Stand in front of the kitchen counter or a chair with your feet together, arms crossed over your chest for 30 seconds.
Stand on each leg, first with your knee up at a 90 degree angle, and again with your knee bent so that your lower leg is behind you also at 90 degrees Do each exercise on both legs.
Stand heel to toe,, three sets for 30 seconds each, alternating left and right as the front foot
Stand on a firm foam block or two pillows feet together for 30 seconds. If you can't stand with your feet together, stand with them slightly apart but closer than shoulder width and build up to standing with feet together.
For the next couple of exercises, you need someone to guard you:
Stand with your arms ourstretched in front of you at shoulder heihgt and march in place -- really lift your kness as much as you can without losing your balance. After getting your bearing, close your eyes and march for 2 minutes. The object of the exercise is to stay facing forward and not travel. Don't get discouraged if this doesn't happen right away. I still travel and tend to turn to the right (my AN side).
If you have exercise cones great, if not, I use water bottles for the next exercise. You will probably need someone to hold onto your hips for this one at first. Eventually you will be able to do thiis exercise without support:
If you have a balance board or plan to get one, try to stand on it, keeping it even for 3 sets of 30 seconds each at first, gradually increasing as much as possible.
Arrange three cones/water bottles (20 oz) about three inches in front of you, one very slightly to the left of your left foot, the next about 6 inches away directly in front of you and the last slightly right of your right foot about three inches in front of you. Tap each cone/bottle, first going from left to right and then riight to left with each foot. as you get better at this exercise, move the cones/bottles out firther -- it's more challenging.
Have someone stand behind you with a ball and pass it back and forth, twisting left and right as you pass it over your shoulder in one direction and bending and passing at about knee height in the other direction -- this can defintely make you very dizzy.
Walking is great exercise for balance and pretty much everything else :
Walk at a comfortable pace looking right and left and up and down as much as you find tolerable. This may make you feel evern more off-balance, but my doctor assures me it strengthens the vestibular (balance) system. Waling on different surfaces is also good -- instead of the sidewalk, walk in the grass, up and down hills,etc.
The following are eye exercises -- you will need two highlighters or magic markers for some of them:
Hold highlighters or markers at about shoulder height and width. Turn your head left and right as fast as you find tolerable for three sets of two minutes each.
Hold one highligter directly in front of your nose, almost touching it. Hold the other an arm length away direcly in front of the one near your nose. Focus on the highlighter closest to you -- if you're doing this right (I find this one very hard) the highlighter iin hte background will appear as two highlighters or you will at least be able to see part of it on either side of the one closest to you.
Sit in a chair and lean over so that you are facing the floor and shake your head as fast as you can -- three sets for 1 1/2 minutes each. This will probably make you very dizzy at first but gets better.
Tape a business card to the wall and sit in a chair about 2 feet away. Turn your head left and right, keeping the card in focu for three sets of 2 minutes. Repeat this exercise looking up and down, keeping the card in focus and epeat this exercise.
Write an uppercase letter on a 3" X 3" post-it note and stick it to the wall. Sti in a chair about 8 feet away and follow the exercises shown above.
This exercise is meant to simulate movement in crowds:
Take a sheet of 8 1/2 X 11 paper and either draw or print out 10 columns in different colors. Hold the paper directly in front of your face (Just a couple of inches away) focus on one column and movethe paper rapidly back and forth for three sets of 30 seconds. As this becoimes more tolerable to look at, make the columns thinner and aldd more columns.
I also recently started doing ballet exercises with a friend who is a dance teacher. These are too detailed to try to explain, but there are dvds you can get on line if you're interested. I don't know how good they are or how good/bad your balance is, so this is just a suggestion.
I hope the things I've described help you and I'd be interested to know how you are doing, so keep in touch.
Best wishes,
Wendy
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Kerri,
I googled this up on csf leaks and a treatment called a "blood patch."
http://www.dizziness-and-balance.com/disorders/central/csf-leak.html (http://www.dizziness-and-balance.com/disorders/central/csf-leak.html)
http://serendip.brynmawr.edu/exchange/node/1688 (http://serendip.brynmawr.edu/exchange/node/1688)
The tinnitus you are complaining about may be coming from the csf leak and if you can get this resolved maybe the headaches and tinnitus will resolve, too. Your surgeon needs to know what kind of shape he has left you in and that the leak he repaired may have become active again. I am sure he would want to know this about a former patient of his! Please don't put yourself at risk for meningitis for very much longer without getting this taken care of. I'm sure your family wants you feeling better, too.
Hugs,
Capt Deb
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Hi Kerri,
A leak is an important thing to take care of. I had this problem... see link.
http://anausa.org/forum/index.php?topic=7179.0
Does that sound like you? Just a thought?
Michelle ;D
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ha! firstly i cannot go back to nyc to see those docs who did my surgery. cant get there and not an option. actually the way i was treated aftertward makes me never want to even lay eyes on those 2 again. they wouldnt even fill out my disability forms! had to request the disability doctors to get it done. and secondly have seen 4 other docs since then and reported everyhting. i guess no one is so concerned so maybe i souldnt be either, i dont know . all i know is that i leak, not sure why but it never was like this prior to surgey. maybe im just being foolish or an alarmist and it is just a leaky nostril although i do wonder why only one would do this. do any of you think that sounds right?
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Kerri~
My nose "leaks" (if you want ot call it that) TERRIBLE when I bend over - like pulling weeds - or any time I exert any energy or get the least bit hot. It onlyb occurs on the AN side and I most certainly did NOT have this problem before surgery. I have to get an extra towel at the gym each morning just for my nose (gross, I know). I have NEVER thought of this as a CSF leak...just a result of the surgery. We discussed this in another thread and apparently a LOT of other people experience this after surgery also. Are you sure this is a leak? I thought that I read where yours also occurs only in those situations... ??? ???
K
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Hi Kerri -
I've had more occasions where my nose was runny and eyes teared for no apparent reason since my surgery,but never considered it a leak to be concerned about because I had no other symptoms most o fthe time, no headache, no salty taste in my mouth, etc. I have noticed that my nose has a tendancy to run a little if I stay in abent over position for a prolonged period of time like when I'm gardening, but Ithink that's just gravity. The last few days it's been pretty cold here and when I went walking my eyes especially teared like crazy amy nose ran, but it didn't leak as much as my eyes. I don't remember this happening to this extent prior to my surgery, so like everyone else, I just attributed it to some residual weakness from the surgery. This is not meant to suggest you don't have a CSF leak, it is very possible that you do if you think you do. Just examine the leak and how it corresponds to everything else you are doing and that is going on. If you truly are convinced it is a CSF leak, you should find a doctor where you live now to address it.
Best wishes,
Wendy
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Hi Kerry,
I couldn't leave town without leaving you a post as I have prayed for you every night since reading your story.
These are the things that saved me from myself when I was down and out and felt like life wasn't worth living.......
Get outdoors. Even if it is cold the fresh air will do you good.
Find a GOOD doctor. There are plenty of them out there so keep searching. If you have to go to the ER and refuse to leave until they run test to see if you have a leak then do it.
Find a hobby and focus on that. If you love to paint then try to find happiness doing that. Don't let your condition control you....YOU control it and find things that you can do at your own pace.
Don't be afraid to take antidepressants...If one doesn't work...try another.
Get rest even if it means taking a non habit form sleeping medicine. Calm Forte is an herbal sleep medicine that works for my husband. It is OTC. If you are not well rested then your body can't heal and you will continue to feel like s***. Trust me on this was because after my surgery I would be awake from 2am on every night and when I started getting sleep I was a totally different person and better able to cope.
Eat healty. 3 solid meals. I was on a feeding tube for 6 weeks after surgery so this took care of that because I got ensure down the tube but it was good nutrition. If you don't feel like eating at least choke down an Ensure. Better if really cold and with ice or do what I did and make a shake out of it with ice cream or frozen yogurt.
Find a pain management doctor. Once you get your pain under control then life won't seem so bad. Pain can lead to depression, sleep loss, anxiety, can run your body down. Get treatment!
You feel overwhelmed with everything right now so prioritize. Say okay today I am going to make an appointment with #1 the pain doc. then #2 ..... Take baby steps. You don't have to get it all done in a day but I would imagine you are in such a depressed, pain ridden state that you probably don't even want to get out of bed much less get on the phone. If this is the case. Delegate tasks. I'm good at this one. Tell your husband you need help. Or if you have kids old enough.......have them get to the yellow pages and do it for you. Sometimes you just can't do it all alone. I needed LOTS of help and wasn't afraid to ask for it.
Take time to RELAX. Lights off, light candles, deep breathe and focus on YOU. Also I read where you wonder if God is just mean or even there at all. This is normal to feel this way. I have been a believer all of my life...a very devout christian and after my surgery I was MAD, Mad, MAD! I questioned God, I screamed at him, etc. "Why me?" Everyone goes through this I am sure. BUT please know that God is there and pray anyway. He is listening. God loves you, your kids love you, there are people that need you and sometimes even when we don't want to live we have to decide that we are not going to be selfish because when we are gone think about the sufferings of your children, your husband. You think you're in pain......think about the Pain/heartache you will cause them if you were to take your life. That thought also kept me going when I felt like dying after surgery when I awoke with facial paralysis and swallowing paralysis. I would always say..........Hunter ya'lls (sorry from Arkansas..ya'll) life would be so much easier and pleasant without me. I hated life. I still have down days.....probably more bad days than good but I do it for my family and because I know that God has a plan for me. Find that inner strength any way you can.
Exercise.........Just a slow walk to the mailbox, go to a park and sit with a good book......that's another thing read positive material. Lots of good books out there that teach coping mechanisms. Or just read a good ole fashion fiction to take your mind off of things! Skipping Christmas by John Grisham is a funny book. Laughter is good medicine. Watch funny movies. Do what makes you feel good. Yes I am rambling but so much I wanted to say before I leave for a week without access to you. Be good to yourself. And last but not least here's some medical information for you to read about CSF leaks.......
Much love and I do know where you are coming from.......been there.
I can't get the medical stuff to copy so will include that in another post.
Angie (crookedsmile)
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CSF LEAK INFORMATION:
Symptoms
Symptoms may include:
A headache that is worse when you sit up and improves when you lay down
Drainage from the ear (rarely)
Runny nose
Exams and Tests
Diagnosis is usually based on your history of injury, surgery, or lumbar puncture.
Tests may include:
Injection of a radioisotope in the spinal fluid to track the leakage
MRI
X-ray with contrast dye
Treatment
Depending on the cause of the leak, many cases go away on their own after a few days. Complete bed rest for several days is usually recommended.
Headache may be treated with pain relievers and fluids. If the headache lasts longer than a week after a lumbar puncture, a procedure may be done to block the hole that may be leaking fluid. This is called a blood patch, because a blood clot can be used to clog the leak. In most cases, this makes symptoms go away. Rarely, surgery is needed to repair a tear in the dura and stop the headache.
If symptoms of infection occur (fever, chills, change in mental status), antibiotic therapy is needed.
(Prognosis)
The outlook is usually good depending on the cause. Most cases heal by themselves with no lasting symptoms.
Kerri.......this is what they usually do in the doctor's office to test you for a leak...............
An easy test that we do in the hospital is to check the drainage for glucose (sugar) with a little strip diabetics use to check their glucose level. If it's positive for glucose, then it's CSF as nasal mucus contains no glucose.
Hope this helps, xoxoxoxox! Angie
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Kerri,
I know it's such a cliche, but what doesn't kill us only makes us stronger. I remember thinking this was it, my number was up. But now even with all of our issues, we are still better off then many others. So, we have SSD. At least we can still hear out of the other ear. I'm sorry to hear about all your other problems, but don't let it beat you down. You are stronger than that. Look at the positives... Everyday that we are still here is a blessing. I will pray for you and your recovery. Hang in there.
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Wendy, I just had to give you props for posting such comprehensive and helpful information on balance exercises. That was quite a lengthy post -- it must've taken you quite awhile to write it -- and we all appreciate the time and effort it took for you to offer it in this thread.
Kudos,
Tumbleweed
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Hi Kerri,
Just checking to see how you are feeling and wish you a Happy Thanksgiving. I hope all the helpful hints have helped and made you feel less alone. Keep posting we are here to support you.
Best wishes,
Wendy
Tumbleweed -- Just doing my part, but thanks
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Hi Kerri,
I'm also checking in on you--I hope you are doing better today.
Best,
Marci
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hi kerri, seems like things could be better, for starters i'll tell you im a nurse in philadelphia, my wife is a nurse in philadelphia, so if you need doctors names please let me know, also have a friend in mountaintop pa who is an ER doc in scranton he may be able to help. unfortunately many of us have felt really bad from time to time and can only imagine the pain. My advice for starters is look into that CSF leak, can be contributing to headaces ,balance issues and othres Csf is like a pool which your brain floats in it protects your brain so if your deficient in qua***** and continually leaking you can irritate other structures ie: cranial nerves. please ,please,please consider the lots of good advice offered by many of the great people @ this site. remember baby steps first things will come, but baby steps first , gods speed in your recovery please dont hesitate to respond
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Kerri,
How are you doing? Please give us an update.
Syl
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Crooked Smile is right, CSF contains glucose as that is the major nutrient to the brain and nasal drainage does not contain glucose. Diabetics used to use urine dip sticks to test their urine for glucose and adjust their insulin accordingly, see if the pharmacy still carries those and test your leak and see what it shows.
And my heart goes out to you and I hope you can find some peace and comfort within yourself. Gandolf (Lord of the Rings, my favorite) says it is not how much time we have here but it is how we use it that is important.
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hey all1thanx for all the great info especially the testing for glucose idea. what a wonderful idea and im gonna do it because u can buy those test strips at a pharmacy.i trust everyones thanksgiving was fabulous! mine was pretty good but very tiring and it has taken me awhile to recover from it. ive been in a fairly good mood despite the real bad eye ive been havin lately. i was real happy yesterday cuz i finally got my new silverware that ive wanted for 4 years! yay! but then i got home and checked my email and became so disheartened. i just have to share this with u guys! i got a response from the an support group coordinator because i had wanted , no needed, to start a support group in my area as the closest to me is 110 miles away and she told me that because there were under 20 people in my area that it would NOT BE JUSTIFIABLE at this time! she said that around 20 percent come to a support group. to me this is a huge blow and also a kick in the teeth (or lack thereof haha)i am of the opinion that if there were even 2 people it would be great. no more isolation and lonliness and a real chance to hug vent and even offer some understanding and support to family members as well. i sent an email back that was not rude but was a little less than kind explaining this and am awaiting a response. perhaps i need to take an add out in the paper to get some folks. maybe im going to have to go the veda route to get a group going. i dont know. all i know is i feel it would help not only me but a bunch of other folks too. there is nothing that can top human interaction and understanding, some venting of the frusretions that no one else understands and a good hug! what do u all think?
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I say "Go ahead with your own support group, what could it hurt and what will you loose other than time spent in getting this going?" I do hope you get a positive response back from them though, I'm sure they are giving you their best information, but perhaps you will prove them wrong, again what can you loose? Even if only 2 people show up, perhaps word will spread and more will come? I know my support group meets infrequently during the year (I think twice), but perhaps this will change as more and more come or the need to meet increases. As for now, they are informative with medical professionals talking about various topics regarding our tumors and treatments.
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Kerri,
I think you need a hug, so here goes...((((((((((((((((Kerri))))))))))))))))))
Syl
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thanks fo the hug !and always back at ya!thanks for the encouragement too. i think youre right i will do my own support group and i think we shall begin in my livingroom once a month because twice a year would be almost fruitless.i looked into veda and i think they may be able to help me get something going. ofcourse it will be persons and family members of vestibular disturbances (a broader range than just an folks) but alot of that we an folks can relate to because it is much the same . infact i already know a menieres guy from another organization i belong to!if they cant help me get contacts i will take an ad out in the paper!its just that i have gone as far as i can in counselling and the development of strategies to deal but i want to go further! need to step up the pace and reclaim the love of life that i once had!everything in me says this would be the way to go so i'll have to find a way.i know all you folks out there experience many of the same frustrations at the lack of knowledge and understanding associated with this nearly invisible disability. the difficulties of living like this wear you down. i know that we all need each other for encouragement, info, suggestions, new stategies and just some love and understanding. i'll keep pluggin away and i'll keep you posted. hope i can remember some of my college communications and teaching classes and some of my instructional training so i can be a successful group leadre! ha! wish me luck (good that is..i've already had bad) anyay i'll keep you posted. and thanks again, love kerri
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YOU GO GIRL!!!!!
You can do it. Make it happen! Let us know how it goes.
Michelle ;D
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Go for it, Kerri.
I think it's a marvelous idea ;D
Jan
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Kerri,
That's the spirit Kerri. Good luck.
Syl
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thanx! i will! ;)
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Hi Kerri,
Starting your own support group sounds like a fantastic idea! I was going to suggest that if you can only get a few people interested at first that you could take turns having the meetings in each other's homes, or if you have the room just having it in your own home is a great idea too! Pleas let us know how it goes!
Best wishes,
Wendy
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Kerri:
I hope you are doing well. Can you update us on how you are doing? I've been thinking about you.
Syl
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hi syl and everyone else there, havent been on the computer lately for many reasons. my son has been staying in my computer room and i have had numerous doc appts too. not doing so great lately. have such severe jaw/ eye pain that it is debilitating. guess the trileptal isnt working for the jaw anymore.also finally got a doc to address my hep c and have to go for a liver biopsy mar 6. not real scared of that tho. not too scared of any procedure since the brain surgery. haha that kinda took the cake as they say! got my mri and ct scan mon. and tues and wed back to the psychiatrist. they had given me this new med and i had a terrible reaction so goin back. also starting counselling altho i hold no real hope i will try to keep an open mind ( haha no pun intended) funniest thing was i was getting a haircut today and went to a new place and turns out the lady who was cutting my hair has an an! wow! shes ok now except the loss of hearing and an occasional wonky head. they found hers by accident during testing for an eye procedure and it was only pea sized so she was able to have stereotactic radiation as treatment. it was rare and interesting to have met her tho because of the rarity. i thought it was kinda cool. and shell be cutting my hair from now on ha! anyway thats the update. will try to talk again soon but very tired from so much pain.oh and id like to ask btfollis who the doc from mountaintop that works in a scranton er is? im in scranton alot. i have a standing appt every fri at mercy hosp annex and usually have all my bloodwork and many of my tests done at moses taylor hosp. thank you everyone for all your encouragement. youve all helped me through alot and i appreciate it so much! love, kerri
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Hang tight Kerri... each day is a new day! Have hope...and believe things will get better.
I recommend a really good book that I read when I was really down. It is called 'Deadly Emotions: Understand The Mind-body-spirit Connection That Can Heal Or Destroy You' by Don Colbert. It is a bit spritual, but the message is really great.
I bought this book when I was very angry and depressed about my situation. I was pissed off at the world and pretty much wanted to curl up into a ball and die, I cried a lot. I was happy when my 11 yr old went away to camp so she did not have to witness her pilar of strength falling apart. I could not 'shake it' as I was told many times to do.
So I bought this book. Anyway a week later on a sunny day my husband pleaded for me to go on our boat with him. I reluctantly said yes. I brought my book to share a few things with him that I had read, I had finished it that morning. We had such a great day that I forgot to bring my book out. On the way home the book flew out of the boat onto the road while it was on the trailer. We didn't notice until it was too late. We went back to look for it but it was gone. Funny thing I never wrote my name in it and I always write my name in all of my books (teacher thing I guess). I wasn't meant to find it. I know in my heart that I didn't need it anymore.. someone else did. I am sure that's why I lost it. When I looked at it that way I knew I was getting better.
Onward and upward Kerri... talk positive to yourself this will help. I know it did for me.... seems like a bad nightmare because I feel so great now. Buy the book and let me know what you think. I'd send you mine but as you know someone else needed it.
Hugs Michelle ;D
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Hello again, Kerri ~
Good to see you post - but I was sorry to learn that you have more ongoing medical issues to deal with. I hope and will pray that the counseling you'll be starting soon may be of some benefit to you as you certainly could use some useful, professional advice on how to emotionally handle the medical problems that continue to torment you.
I underwent a liver biopsy (long story) prior to my AN surgery. It felt a bit weird, sort of like what - and I can only guess - a baby kicking in the womb feels like. However, it wasn't painful and all over in about 30 minutes. You'll be fine. :)
Finding a hairdresser that had an acoustic neuroma is certainly unusual as well as serendipitous. I meet a fair amount of people and have only met one who also had an AN, and I knew her long before I was diagnosed. She, too, had her surgery years ago and had some complications (mild facial paralysis) but married and has a full life.
Thanks again for your update, Kerri, and please continue to keep in touch. Your input is valued, here.
Jim
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Kerri:
Nice to hear from you, But I'm so sorry that you're still having a rough time. Good luck with all your upcoming appointments. Keep us posted.
Syl
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Kerri,
Wow I just read your post and thought that was me. I had severe depression after surgery with all the medical conditions (I thought the Dr.'s got all of the tumor 3.7 c.m L side so now I will be back to normal in no time lol) that my surgeon started me on anti-depressents. I thought my life was never going to be normal again and I all I would do is cry and ask why me. I am a single mother of 2 children so I knew I couldn't give up but, I didn't know how to go on. Long story short I am 23 months post surgery and I still have medical conditions and last week I got to add a new medical condition to my list. In October a took a short term medical leave and decided I couldn't handle the depression with just anti-depressents any more. I found a wonderful individual therapist who is helping cope me with the emotional side of the AN ( I think that it is not only physical but, emotional damage that our bodies go through). I have learned that people take things in life for granted and until they suffer a loss like AN patients they won't understand what we go through. I understand that my life will not be the same as pre- surgery but, it can be happy post surgery but, in a different way than before. In time you will come to accept the new you (I am still working on that) and the NEW LIFE you have.
Michelle is right go ahead and TREAT YOURSELF YOU DESERVE IT!!! I do and it makes me feel so much better when I do. I will keep you in my prayers. Staying connected to this web site is very beneficial. I find it to be a blessing that I know I am not alone and people here can relate to me.
Golden
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Golden:
The post-treatment recovery certainly takes an emotional toll. It sure has for me. I'm 8 months post-op and don't accept that this is how the new me is. I'm gonna wait til my 1 year anniversary to evaluate the new me.
I'm getting treatment for headaches and am having such a difficult time. The meds have me feeling without energy even before my day starts. The neurologist says he's been very successful in treating headaches with Pamelor, so I'm sticking with it. But it's hard getting ready for work and making it to work. Somehow I manage to make it through my 8 hour shift. I hate feeling crappy all the time--sometimes worse than others--but I don't like telling my family and friends about it all the time. I don't want them to run the other way each time they see me approaching.
That's why the AN crowd is so important to me. You're so right in saying that you are not alone and people here can relate. That is why there is always someone willing to lend and ear and share some advice.
I hope that there are better days ahead for you.
Syl
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Just saw your posts today....I had vestibular rehab in Pittsburgh with Todd Henklemann. He is wonderful and a wealth of knowledge. I'm not sure how far you are from Pitt but he will talk to you on the phone. Might be worth a contact??? Stay strong...we're here for you.
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hey there you guys, finally feeling a little better today. haha syl, the psychiatrist just put me on pamelor. hope it works for the depression and the headache. i call it my pamelor anderson haha. just add it to the list of meds! sorry to hear about all your trials golden. sounds like youve got your hands full too but it also sounds like youve got a good handle on it. ill be praying for you. i have a headache always but do any of you wake up every morning with severe hangover head even tho you dont drink? anyway ill be thinking of all of you and thanks so much for all your good advice and encouragement it sure helps keep my morale up! love and hugs to all. and im also gonna look for that book too! kerri
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Kerri:
The pharmacist told me that Pamelor isn't used for depression anymore. I guess he was wrong.
Syl
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Hi Kerri,
I haven't been on much because I've been preoccupied wth a sick friend. Sorry to hear you are still having such a rough time but hope your pamerlor anderson helps you with your headaches and depression. In spite of everything, it's wonderful to see that you still have hope -- it's a true testament to the human spirit! You know we will always be here for you and even though it's been a while for me, you are often in my thoughts.
It is amazing that you found a hair stylist who had an AN -- I'm glad for her sake that she hasn't had any major problems and happy for you that you found someone to talk to in person about your mutual experience once in a while -- I'm sure it will be good for both of you. Keep haning in there.
Hugs to you,
Wendy
Syl - Sorry to hear you are having such a touch time with headaches and hope the doc manages to find something that helps without miserable side effects. How are things going with Chatty Kathy?
Wendy
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Wendy:
I've been wearing Chatty Cathy every day, all day long. I'm quite used to it now. I get the best use out of it when I'm outdoors going for my daily walk. Having a sense of directionality makes the walks so much more enjoyable. Without it, I must look like some paranoid drunk turning my head constantly in response to every dog's bark, gardening tool, and car engine while each turn of my head results in loss of balance. Can you picture that? Not a pretty sight.
I found CC is not as useful at work, especially now that my cubicle has been moved to much bigger room with some 40+ other cubicles and much more noise--lots of phones ringing, lots of people chatting, oh so much more noise. I get some directionality, but not like outside. I still feel I'm better off with it than without it.
Thanks for asking.
I hope your friend is doing better. You're a good friend, Wendy.
Syl