Help! Multiple Symptoms and Still No Diagnosis

[drumrollplzz]

Star42,

I would try and forget about the Chiari 1 thing for now. I have read a good bit about it and as long as there is no syrinx, the problem is usually just the annoying sensations it can cause. I've never read anything about Chiari 1 obstructing the carotid artery or causing a stroke, I assume these complications could occur only in very serious cases. Don't let the paranoia get to you.

I forget now, do you/have you had the head pressure sensation too? That's my main symptom and it has been for 6 years almost.

[♣ALT]

(I went to China because my doc and thee nuero told me that there was no cure or medication for cerubellar ataxia!!

[bmqsnowboarder]

Hi All. It's been awhile and I just wanted to give an update. I went to the Headache center here in NYC about 1.5 months ago. I had to fill out a 15 page questionnaire and noticed that a lot of my symptoms were listed on there. After going over my history and another neurological exam the doctors said that I appear to be suffering from a chronic type of migraine that isn't common. I started suffering from headaches at the age of 18 but I would just take two tylenol and I'd be fine. My doctors told me that it could be due to stress or other things that resulted in the headaches becoming a chronic problem. I told them that the other headaches weren't the swooshing/pulse buzz sensations I get now and they stated that while the headache has changed, it's still a form of a migraine.

I don't know what that has to do with other things like the pain and tightness in my jaw but they said it's all related which is why many of the symptoms I have appeared on the questionnaire. Also, anxiety is definitely an issue that made things worse. They gave me a muscle relaxant for when I have tightness in my jaw. They gave me something that is an antihistamine but its also suppose to help with anxiety and pain when needed.

The main thing given was amitriptyline. They said to start off with 10mg for a week and then 20mg after that. They explained that it's an old med that was originally used for depression but in low doses it's used as a migraine preventative. They said it takes some weeks before it starts working. I took 10mg for 2 weeks then increased to 20mg. I must say that it has helped a lot. I have hardly any interest in trying to go online and self-diagnose myself like I use to. That's probably because my symptoms have decreased a lot. The funny feeling I was experiencing in my head is barely noticeable throughout the day and when I go to bed, it isn't that bad as it use to be.

I do still have a pounding feeling in my chest that I can feel at night and it gives the sensation of feeling my pulse in other places. My blood pressure was elevated the last three times that I went to the doctor and I was given some medication to take for it but I refuse to do so right now. I'm back to exercising 4-5 times per week and I think that has helped a lot too.

The only problem I found is that I started gaining weight fast on the amitriptyline. I asked my doctor and was told that it doesn't slow down one's metabolism but it does give you cravings for carbs. I didn't start eating more so I still think it's the medication. I wanted to come off of it but my doctor encouraged me to stay on until at least my next visit in June since it has helped so much in a short amount of time. It took me a long time to lose weight and I can't stand the thought of gaining it back so I've started weaning myself off of the medication. I just hope that my symptoms don't go back to what they were and that an alternative treatment will be just as good. My symptoms aren't 100% gone but like I said, it's much more tolerable.

OK, that's it for now. I just wanted to let you all know what my current status is. All the best to anyone reading this.

[babie_blu1984]

Hello Hans Thommes.
I am new to this site and have seen your message regarding ataxia. Have you had second/third... opinions regarding this diagnosis. Has the doctor who initially diagnosed you with ataxia ruled out other conditions, like ALS, MS, Lyme's Diseas, et. al.? Have you had tests to see if you have excess copper, lead, mercury, etc...? Do you take any prescription, over-the-counter medications, vitamin/mineral/amino acid/herbal supplementations? What is your diet like (also what was your diet like when you were younger, if different). Are there environmental factors which may attribute to your condition; carbon monoxide overexposure, radon, argon, lead, arsenic, cyanide, reside near a waste facility, agricultural cite, farm, chemical plant, etc....? Have you had your drinking/bathing/shower water tested (do research) for possible contaminants? How much sleep (especially, deep REM sleep) are you getting? How much sun (without sunscreen, during lower UVA/UVB rays time) do you get. What is your living environment like; do you have many area rugs, wall-to-wall carpet, gas appliances, high-level radiated electronics, etc...? I would recommend (if not already done/doing) taking omega 3, 9 AND omega 7....yep, there is an omega 7...if you didn't already know...., co-enzymes A, B and Q-10, quercetin/bromelain, chissandra adaptogens, vinpocetine, boswellan, essential amino acids; particularly, but not exlusively, taurine and leucine, pure olive oil, coconut oil (some may be allergic to coconut oil) and B-complex. Research the internet to find top quality, USDP-grade supplements. Also, there could be certain foods which may at first may seem beneficial for you, but may actually be damaging to your system. You may/maynot have been made aware of how a persons' blood-type affects their health; < edited >

Hope this helps

[I ♥ TWILIGHT MOVIE!]

So then, what do *you* personally think is causing your symptoms? I'm not sure if you think it's the Chiari or not. I'm asking because some of my symptoms--and I have lots of symptoms of as-yet unknown cause--overlap with Chiari. But I try not to look into this condition too much (or any other potentially serious condition) because i'm prone to anxiety and hypochondria.

There is much controversy surrounding Chiari 1, stemming from the fact that so little is known about it. It's not yet understood why some people with the herniation report no symptoms at all (as you mention, Chiari is often an incidental finding) while others report dozens. It's a very tricky condition, and quite frankly, I think a lot more research has to be done.

[xX!irene!Xx]

Dear star42,

Was a feeling of "pressure in your head" one of your symptoms? If so, how has the amitryptiline worked? That's my "killer symptom," I've had it for six years in fact. Actually I have replied many times in this thread, but can't remember what we talked about, too lazy to look back lol...

Please reply, thanks!

[kingleo]

[QUOTE=leepers;4146827]Hello Hans Thommes.I had been tested for heavy metals and when they diagnosed me they told me there was no cure or meds for it so I went to China for stemcell surgary whitch didn't work! I was working for the AF on the new radar transmitter whitch I thought was the problem but I couldn't proove anything now I'm living in a new house so I know thats not the problem now Im doing the B12 reegiment trying to see what that dose for me before I go broke!!

[yacob]

Here's an obscure question for Benit.... Do you smoke?

[lori k]

Hi Rose. I don't know what my B12 level is. I guess I'll ask my doctor as I am scheduling another appt because I haven't had my pap smear done yet for this year. I was feeling a bit better for some days but now the headaches, fatigue, and shakiness/vibrations are back and it's bad. I also feel like I have a sinus infection or something with sore eyes, pressure in my face, etc.

I'm going tomorrow to an ENT to check for an inner ear problem. I notice nowadays that the vibration sensation I'm experiencing feels like it is linked to my ear. It's like I can hear a vibration/motor sound coming from my ear. I seem to be quite sensitive to sound now. Also, I'm having on/off pain and pressure in my ear and jaw.

Another thing I'm going to get tested is my iron level. I was anemic a couple of years ago and had to take iron pills. I took them for a short time and later on was told my iron level was back to normal. I noticed that out of all the blood tests I have taken, there has been no recent iron test. They ordered one some months ago but apparently they needed to test it again but it was never done. I believe the last time my iron level was checked was in Dec and at that time I didn't have any shakes, extreme fatigue like I do now, or these headaches. I looked at a list of iron rich foods and realized that I don't eat any of those foods on a daily or consistent basis. The only one on the list that I eat is steak a couple of times per month and I eat it very well done. I hardly eat breakfast too which I have to start doing.

I was talking to a friend and she told me to check my iron and B level too. She said she had a lot of the symptoms I have and it was due to an iron deficiency. As for aspartame, I looked at a list of food and beverages that contain it and no, I don't think I consume much if any at all of that. I wasn't aware of the danger associated with it either until now. I use to eat a lot of Chinese food and recently changed restaurants when I found out that the one I was going to used MSG.

[Sabrina T]

I've replied before to no avail I was diagnosed with ataxia went to China for Stemcell surgary no results that I can see am now taking B12 pills 5times a day and have not felt anything I couldnot get my doc to inject me