Help! Multiple Symptoms and Still No Diagnosis

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.
 
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.
 
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
 
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.
 
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!
 
leepers said:
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!!
Click to expand...
 
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.
 
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
 
Some doctors just don't buy into supplements much, and would tell you not to take them anyway. The fact of the matter is, B12 is almost completely safe, there's never been an adverse reaction recorded except in maybe just a few very rare cases. Essentially the data on adverse affects from B12 is "insufficient" to provide a tolerable upper limit, so that there is no upper limit set on B12. It is a very very safe vitamin contrasted with, say, Vitamin A in retinol form, where it has been proven that high doses over long periods of time can cause liver problems.

If you think some of your symptoms match up with B12 deficiency, it's my humble opinion that trying a high quality B12 supplement would be safe. Again tho, thats just my two cents.

About my daily Vitamin D intake, I take 1000 IU of Vitamin D3 in one capsule, another 400 IU in a fish liver oil capsule, and I get a little from my multivitamin and a little from soy. I don't think this is too much; what do you think?
 
Happy New Year to all. I saw my ENT today for a follow-up and was left feeling like my search for a diagnosis is in vain at this point. He is a nice doctor but he told me that while I am showing some loss of function in my ears, he doesn't think my symptoms are the result of an ear problem so he doesn't really want to treat an isolated symptom without knowing what exactly is causing my problems. He said that he absolutely doesn't feel all of this is the result of anxiety. He said he's not trying to scare me or anything and doesn't think it's something serious when looking at the results of all my past exams, blood tests, etc BUT he said he does think there is an underlying condition causing all of these symptoms. He obviously like all of the other doctors doesn't know what the condition is at this point.

He wants to see me again in July. He said he didn't even know what kind of doctor to refer me to. Seems like a lost cause sometimes. Anyway, my next stop is the headache center in March. Maybe they will have some answers for me. In the meantime, I started wearing my mouth guard again and it may be a coincidence but the head and ear buzzing hasn't been as bad.

Also, I have trouble explaining the actual sensations I feel. After speaking to my ENT today, it seems that the vibration I speak of is really my pulse that I'm hearing and feeling in my head, neck, and chest. I said before that it varies where sometimes I feel it in my head and ears. Other times I feel it in my chest too. Lately, I've been feeling my heart pounding really hard in my chest. It's not a fast heart beat but I can feel it pumping hard. He asked me if I was anemic and told me anemia can result in this. I was anemic at one point a couple of years ago but don't believe I am now as I've had recent blood tests that didn't show anything.

Another thing, I was sick with the flu for the first time last year. I never went to the doctor. I could barely move but I got better after a few days. My ENT said that the flu and other viral illnesses can produce some of the symptoms that I am experiencing even though I had it last year.

Last but not least we talked about the chiari 1 malformation and he gave me a better understanding of what it is. I have pretty much chosen to block out the fact that I have one. I don't even like bringing the topic up. He talked to me about it in detail and in the end, he agrees with my neurologist that it's not the cause of my "condition."
 
Hi Benit. I pretty much blocked the whole chiari 1 thing until this evening when I started my "panic search" after coming home from the doctor. Yes, I have head pressure too. The pressure is mainly in my forehead and cheeks. It's on and off. I also get pressure in the middle of my head where it feels like my head is in a vice but that is on/off too. Perhaps the TMJ issue is the cause of that.

One thing my ENT told me is that with all of the potential things that it may be, the common factor in all of the possibilities is related to stress. There goes that word again...
 
The problem (in my case) is that there are so many random and steady symptoms that relate to many things. It can be anxiety, candida, viral illness, TMJ, neurological, vitamin deficiency, etc. Right now it's just a process of elimination.

I had the ABR and ECOG tests today. With regard to the brain stem test I was told that my results were "excellent." So much so that they said the 0.00 result is rare but great. On the other hand, the ENG showed weakness in both ears yet my hearing is great according to the audiologist so I don't know what to make of it all. I was scared of possibly having Meniere's or an acoustic neuroma but these tests seem to have ruled those out. Plus, they said the MRI I took in the summer would have showed a tumor. I know that anxiety is playing a role in all of this because I was freaking out during what was really a simple audio test and even though my results came back fine, I found myself wondering "are those really my results? Is the machine faulty?"

I do sometimes have the vibration/buzzing feeling in my chest but lately it's mostly been in my head and ears. I would say from my chin up is where most of my problems are (jaw, ears, eyes, head, face) although my shoulders always seem to be very tight and it's hard to relax them.

Also, I notice that the buzzing sound mimics my pc. I have a custom built pc in my bedroom that runs so loud each day and then 3 other pc's in my home. Don't know if that plays a role or not in the head/ear sensations. My ENT is talking about some kind of injections for the tinnitus. Don't know if I want to go that route.

My plan is to start on my vitamin/supplement regimen and see if that helps. As for the person who asked me about sleep. I do not get a good night's rest but I do sleep a lot. I go to bed around 1am - 3am and sleep for about 3.5 - 5.5 hours. In between those hours I do wake up to go to the bathroom so it's not a steady 3-5 hours of sleep. Once I'm up around 6:30am, I go back to sleep around 8:30am - 10:30am and sleep a few hours more.
 
Yes, that was a symptom. I sometimes felt like my head was in a vice. My head felt "heavy" like something was weighing it down or sitting on my brain. I also had pressure in the forehead area as well. I thought it was related to a sinus problem but my ENT and other doctors said my sinuses were clear. I remember wondering if I had a tumor or something b/c of the constant pressure. That feeling is pretty much gone now. I just remembered that I use to complain about a sensation of pressure in my eyes and that's gone too.

The doctors (two that work together) said that the migraine is something like a tension headache. They said this type can result in a feeling of pressure in the head, neck, ears, etc. I became so tense without even realizing it. When I started taking the meds and then went back to exercising I could slowly feel the tension being released. I'm still somewhat "tight" but not nearly as much as I was before going to the headache center.
 
The problem is that I don't think anyone can reasonably be expected to figure out whether all these triggers are causing symptoms, or not. Sometimes we don't have much choice in what we live near, not everyone can get their water properly tested (not to mention, bottled water is not much safer), and not everyone can afford the tests to check for mold spores in the home, etc... I keep coming up against this myself. How am I supposed to know what minute trigger(s) is causing the problem? Who has the willingness or patience for that?
 
I was suppose to have an ENGH, ECOG, and ABR test today. I only did the ENG test due to their equipment not working today. My hearing is fine and the eye movement part of the ENG test was fine. The last part where they put cold and warm water in your ear showed that a normal response in my left ear but hardly any response at all in my right ear. The audiologist said she doesn't think it is Meniere's seeing how my hearing is fine and I don't have other related symptoms. She said commonly a viral illness can result in the poor response that I got from my right ear. She asked if I had been tested for Lyme Disease or other viral illnesses.
 
I pretty much have had these same symptoms on and off for a long time. It became really bad for over a year. I was finally diagnosed with fibromyalgia and put on some meds. I am feeling much better. however, i didnt present with typical achey joints so MANY docs missed it. The only thing even remotely noteworthy was low ferritin (iron stores) after having a baby, and high blood pressure which i never had before.
 
I was thinking of taking this information to my doctor, but I just looked up Amitryptyline, and that's some pretty powerful stuff, being a TCA and all. I'm on an SSRI and concomitant use with a TCA is not recommended... I have to wonder if I'll ever get this problem solved. I wonder if there are some other migraine/headache meds out there, safer than Amitryptyline, which can also be used for chronic tension headaches...

On the other hand, maybe my head pressure is different from yours, and could respond to something else... you say yours is like a vice grip from the outside, but mine is more like "from within trying to push out," or an opposite but similarly annoying sensation. Makes sense?
 
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