Questions About Hyper Form And Symptoms

[andersondebra]

Hi,

I am new here but not new to dysautonomia. I was dx 3 years ago with the hyper form, but after going on beta blockers for 9 months I went into a remission, which I hoped would have lasted forever, but that was not to be. About a month ago I started with inconspicuous symptoms which lasted about 2 weeks and then it hit me like a mac truck. I wound up in the hopsital for a couple of days only to find out that it was my hyper dysautonomia again. However, this time my symptoms seem to be amplified and some symptoms are new, so I am wondering if anyone else who suffers with the hyper type or any type experience these symptoms as well.

List of my symptoms-

SEVERE DIZZINESS (even when laying down, this is probably one of my worst symptoms)

weakness

uncoordinated

blurred vision

muscle twitching (especially at night when trying to sleep, and it is all muscles)

headaches

weird feelings in my head (these are hard to explain)

high BP / high heart rate

shortness of breath

chest and throat tightness

feeling as though someone is sitting on my chest and I can't enough air

change in voice it is becoming hoarse and raspy)

anxious for no appearant reason

adrenaline surges (even wake me out of sleep)

shortness of breath when talking or eating

These are the major ones that I can think of, but so many of them are new this time around for me. One last thing I also have been dx with EDS, chiari malformation, fibro, colitis, psioratic arthritis,osteoperosis and I am sure I am forgetting something but while in the hospital all of these illnesses being the cause of this flare were ruled out, so it is not something serious, or at least that is what I have been told by the docs at Vanderbilt. Also I was dx by Dr. Biaggioni at Vanderbilts autonomic clinic three years ago and again this time.

Please tell me if you are the same as me or if these symptoms seem to be normal for hyper forms or any form for that matter and how you cope with these symptoms.

Thanks, Dizzyizzy

[firewatcher]

Howdy,

I was dxed by Dr. Biaggioni in November of 2008. I am also HyperPOTS. Unfortunately, these are pretty common for HyperPOTS. I have found that the beta blocker works much better with Klonopin/Clonazepam, a benzodiazapine (tranquilizer.) The BB alone just won't do it for me. Vandy also suggested Mast Cell disorder, which may explain your throat and chest tightness. Singulair and Allegra work well for me for this. I haven't found anything that helps the blurred vision. Trying to lead as boring a life as possible is the only way I've found to reduce the adrenaline surges and sleep issues. For me and the other hyperPOTSies I've spoken with, proper medications seem to be the best control for us. Do you have a good GP that will tinker with meds till you find what works?

Keep us posted, and try to find the peace of boredom!

[kluesyk]

I have all of your symptoms with the exception of the muscle twitching at night....my muscles just feel like they are too short and hurt all the time and have small hard round painful knots in them. I also have migraines.

Dr. B at Vanderbilt also diagnosed me with Hyper-pots in March of this year.

After no luck with various beta blockers, aldomet, SSRI's and Mestinon, I am doing better with a VERY small amount combination of clonidine 0.1mg and 1.25mg of Midodrine. I take 1/2 of 0.1 clonidine and 1/2 of 1.25mg Midodrine upon waking and then take the other half around 2pm. It is helping with the high heart rate and blood pressure as well as the flushing that I have. I am SUPER sensitive to meds, so I have to take a very small amount. The beta blockers even in small doses made me feel so much worse and dropped my blood pressure and heart rate too much, but I had to find something that worked cause the last stress echo I only walked 3 minutes and my heart rate went to 180 and my blood pressure 176/110.

Dr. B is the only dr I have seen that totally understands how sensitive we are to meds. He said even tho it seems contradictory to take clonidine to slow everything down and relax and then to also take midodrine to constrict... it works for me. I think all my regulators are broke.....

When I get a huge surge of adrenaline (which happens if I walk very far or even talk very long, or do much anything physical) I have used 1/2 of a 25mg Xanax to block the adrenaline which works well for me. I don't take it everyday, but it is there if I get tipped over the edge.

Drinking coffee 3x a day also helps me. I know it is a problem for some.

Wearing compression tights (bought them at K-mart...the others were too difficult for me to get on....I am not that strong)from my ankles to waist helps me stay upright longer.

When I start going into a downhill spiral, sometimes eating crushed ice and putting an ice pack on the back of my neck will help stop it from progressing.

I used to have severe shortness of breath and chest pain that the drs all said it was asthma, but I don't wheeze and the inhalers really didn't help that much. A year ago I noticed a huge improvement after a round of Azithromycin for an upper respiratory infection. I had my dr test me for infections and what popped up was a high antibody for mycoplasm pnuemonia which indicated my problem was chronic. My immune system is not the greatest and for some reason I can't completely clear this bacteria out of my system, so I have been on low dose Azithromycin now for over a year, and the high CO2 levels in my blood have went down, the shortness of breath and chest pain is better, so I do think it helps me. I take probiotics for my digestive health and avoid sugar due to being on antibiotics for so long. I know it is strange, but it helps me. Steriod shots will also dramatically help me,too, and my neurologist is testing me now for why that helps so much (possible autoimmune issue).

Also I have found out I have a severe renal magnesium wasting disorder.(saw a nephrologist for that) I take 750mg of magnesium a day, and also supplement potassium and sodium.

I have stopped being so angry about the change in my abilities and have decided to accept what I still can do and try and not dwell on what I have lost. It has been difficult for me as I am a fixer, and thought for sure I could figure out a complete fix for this.

My husband is moving my bedroom downstairs. I ordered a lightweight wheelchair for when I need to walk a long distance. (Not possible right now without triggering problems). I can still walk, but must walk very slow and stop and rest. I got my doctor to write out a paper so I could get a disablity tag for my car which has helped a lot. Every step I take I measure, cause I only have so much that day. Also, I cut out stressful situations and people out of my life as much as possible.

We are all different and what has helped me, may not others. I hope you can be better soon.

[andersondebra]

Thank you to both of you for your input, it sounds like you are both doing well with your illness, I am sure you wish to be better but you have both found ways to live your life. I too did that the last time but it seemed as though I was not this bad, however I was wheelchair bound the last time and I am again this time but there are so many other effects going on that it is making me scared.

I am on topral tartrate right now which is not working well for me, it keeps my Bp down when I am sitting still but when I get up and get physical it does nothing and when I lay down my Bp drops very low, by morning my Bp is usaully around 73/47, I got to tell you that it freaked some nurses out, LOL! but I told them that I was ok I just needed to sit up for awhile and sure enough my BP jumped up to 138/97 within minutes. Anyway, Dr. B put me on aldomet this time with the beta blocker for now but we may take that away in the next week and then midodrine at night to help raise the Bp for bed and I am suppose to salt the heck out of all my food and get plenty of water. So, we will see how all this is going to go, the only thing that I was on the last time but not on this time is valium.I may need to ask for it again if I cannot get the adrenaline surges under control.

I am like you,(klusyk)I cannot walk very far at all, I am back to my wheelchair and I too have a handicap tag for my car. I also cannot talk very much because it too can send me off on adrenaline surges. heck just washing my hair or blow drying sends me off on an adrenaline surge. I don't know about you but even laughing sends my bp over the edge.

I know it is going to take me time again to re-adjust my life, but I will get there and hopefully I will be able to put this back into a remission again. That is what I am working toward. Anyway, thank you, it makes me feel better to know that I am not alone with these symptoms.

God Bless

[Lovebug]

Hi Dizzyizzy,

I have most of the symptoms you've listed as well. One point I'd like to tell you is that my doc always emphasizes the strength of meds. For example, I started out on 2.5mg of Inderal and worked my way up to 5mg, which is what I currently take. He told me that Toprol was too strong so you might try a different type of beta blocker. Regarding the scariness of the symptoms, we can all definitely relate. My latest symptom that I attribute to Dysautonomia.......gagging. It comes on without warning sometimes and then just goes away. Thank God it doesn't last long but I know it's the Dys b/c it's an autonomic reaction. The danger for most of us is that we attritube almost all symptoms to this disease when it could be something else. That is what scares me the most. I just pray and trust God to take care of me and lead me to the doctor when I need to go. I hope you feel better soon!!!

Edited August 28, 2011 by thankful
Removed quote - please use Add Reply at the bottom of page

[Chaos]

Your list certainly sounded familiar to me. I'm grateful that currently I am doing really well, but I've had all those symptoms, plus some more, in the past. It definitely was scary to me to have a list that long and no one around who could explain it.

Hoping you get through this bad spell soon and get back to doing as well as you were in remission last time.

[icesktr189]

Hi there!

You sounds just like me. I was in remission for a year and a half and then BAM I was terrible. I thought it was the pregnacy, but nope it was severe allergies. What caught my eye is the dizziness even while laying down. With POTS it should get a bit better when you lay down. I know that you can still have episodes while laying, but if it is constant, it sounds like an inner ear problem. For me, the dizziness actually gets worse because it puts even more pressure on the inner ear when you are laying flat.

When my allergies are severe (they are 10 months out of the year for me), my POTS is TERRIBLE! I have adrenaline surges, dizzy all the time, feel like I contantly am sick, pretty much all the symptoms you just named off. I had no clue that allergies could do this. I would go see an ENT and rule out ear problems before you start switching around your POTS meds!

[kluesyk]

dizzyissie,

Had a quick question....all the followup contact I have had with Dr. B has been through email.

After your diagnosis, was it difficult to get a followup appointment with him?

Is that even possible?...I know I had to wait a long time to see him the first time, and he seemed to want to be "diagnostic" and let my drs here follow through. But the problem has been that the drs here do not know enough about this disorder...

[andersondebra]

Hi Klusyk,

I had no problem getting back into him, but let me explain something, because I know alot of people wait a very longtime to get in to see him and other specialists.

You see, the first time I went to see Dr. "B" I lived in Chicago, IL. and I had been hosptialized at the University of Chicago Hosp. I had been hospitalized for about three weeks and I was pretty bad as far as not being able to even sit up because my Bp would sky rocket up to 248/117 and my heart rate would also go up to over 200 bpm. so, my docs would not let me go home. They gave me a TTT and realized I had some form of dysautonomia but they were not aware of this type, it made no sense to them and they were unable to treat me because they had never seen this type before, so it was my cardiologist at UC that got me in to see Dr."B" within days. I was then transferred to vanderbilt from UC in chicago, so I did not have to wait.

OK, so then I go back home to IL. after being dx and treated by Dr."B", but within weeks I began having problems so my docs in IL. called Dr."B" and began working with him long distance. Within about 6 months my doctor in IL. took a couple of week leave to go to Vanderbilt to learn more about these types of illlnesses and to meet Dr."B".

Shortly after going into remission my husband and I moved to TN. so when I had this attack I was not sure what was going on with me so I first went to the ER at Vanderbilt, where I was admitted to the hospital for a couple of days. Due to my other illnesses the docs wanted rule out these symptoms being caused by something really serious. When they realized that the symptoms were being caused by dysautonomia again, they brought the dysautonomia team in. Dr."B" was out of town while I was in the hospital so once I was released I was set-up with an appt. to see him the first day he got back in to town which was 4 days later.

I did see him again and we went over all my meds and designed a new program again for me. he remembered me very well which was really nice. He then told me that if I had any problems to call his nurse and set up an appt. to come back in.

So, to answer your question, I did not have any problem getting into see him the first time or this second time. I think it is because I had a doctor at the time in IL that was very interested in learning about me and this illness and from DR."B" I also communicated via the internet with Dr. "B" even after I got better, I would email him to let him know how well I was doing and when my doc would call him or go down to see him he would be informed about my progress, so he knew me from that. Also being admitted through the ER and coming in from another hospital in IL got me through the door pretty quick. So, I know this probably doesn't help you much but that is how I got in to him so quickly both times.

My suggestion to you,is to try and make another appt with his office, because you are a returning patient you may be able to get in quickly too. Also if your docs do not know much about this disorder they can call or email Dr."B" regularly to keep getting advice on how to treat you. Dr."B" is really good about working with other doctors and adjusting your meds. you know I even had an anestheiologist call him to find out how to put me to sleep for a procedure and Dr."B" informed him on which anesthetic to use and what to watch for while under and how to treat me afterwards. So, you may want to ask your docs to work with him more to help you. I hope this helps you.

God Bless

Dizzyizzy

[kluesyk]

dizzyizzie,

Thank you so much for your info!

I have given the contact info to my cardiologist here and he didn't seem interested in contacting Dr. B. He just got VERY frustrated that I could not tolerate any beta blockers and kinda gave up I think. I takes a special one to keep tweeking the meds and dosages until you find the right one. The nephrologist I saw was the one that suggested and finally precribed the clonidine (which was what Dr. B mentioned during our appointment), but my cardiologist here said he didn't like the side effects and didn't want to perscribe it. Just wish I lived closer to Vanderbilt.

I guess I need to find a doctor interested in learning more about this to work with Dr B. So hard to find a doc that wants to oversee the whole health picture.

Thanks again....and I hope you are soon feeling better!