tachyfor50years

Once in a while, I get night leg cramps which last few minutes, leaving behind such pain that lasts for a day or so.

This time, while I was picking up my dropped eyeglasses from the floor in my office, bam! I get this sudden, severe cramp in my upper arm; it was so intense that I actually saw the muscle ball up under my skin. I passed out completely from the pain. I am aware of balancing

Potassium, Sodium and fluids. I am pretty sure that I fainted because of that unpleasant stimuli (vasovagal response).

Thank Heaven, nobody came or passed by my office otherwise they would’ have taken me to the ER, where I get missdiagnosed and humiliated; The last thing that I need is an ER psycho-sadist Doctor!

While I have no idea what a "nerveblock" is, it sounds like it is less invasive than an ablation and if I am not wrong, it is for treating inappropriate sinus tachycardia.

I Googled it and found this artical from 1976! it is called (stellate ganglion block):

http://www.ncbi.nlm.nih.gov/pubmed/1247352

Here is another artical from 2012!

http://emedicine.medscape.com/article/1819950-overview

Hopefully I am not wrong here, if so, then (moderators) feel free to delete my reply!

Here they are:

http://journals.lww.com/anesthesiology/Fulltext/2012/01000/Dysautonomia__Perioperative_Implications.35.aspx

http://journals.lww.com/acsm-msse/Fulltext/2011/05001/Effects_Of_Ingesting_A_High_Sodium_Beverage_On.1328.aspx

http://journals.lww.com/jpgn/Fulltext/2010/09000/Gastric_Electrical_Activity_Becomes_Abnormal_in.13.aspx

http://journals.lww.com/jpgn/Fulltext/2008/03000/Orthostatic_Intolerance_and_Gastrointestinal.8.aspx

Have a good weekend everybody!

Thanks jr, I really appretiate your time and effort.

If you don't mind, I have a question; is there a difference between cardiac perfusion imaging and CCSVI Doppler?

Thanks in advance.

5 years a go, I had one sleep study and then couple years later, I had another one in another sleep lab, both were normal but I always wake up with chest pain, nose pain, difficulty breathing and everyday headache which attacks me gradually. I am always fatigue and wake up frequently during the night from nightmares or from pain. I drink herbal teas and take pain killers or patches with muscle relaxant every night plus I have no energy during the day. I am confused and never know if I have developed a sleep disorder or it is all from Dysautonomia.

Kimbellgirl and CharmedLinz,

Thank you both for your kind replies, I especially appreciate all the time you spend to answer my question.

Kimbellgirl,

I am glad that you have good doctors, to know you have a great doctor is comforting.

You mentioned (Autonomic Disorders Center of Alabama in Birmingham), do they do all the tests for Dysautonomia? Did your insurance cover everything?

Thanks for the Youtube.

Dear kim,

There are tons of cardiologists, a bunch of EPs and neurologists in my state, but most of them are interested in structural heart diseases and procedures or they are not interested in treating my condition for many reasons.

I have been to over 20 of them and have given up on them; I have tried to educate those local doctors but they blamed me for my devastating illness. They have treated a partial symptom by itself and they have missed or denied the whole picture (dysautonomia).

The last EP that I saw, did my 3rd TTT (not him but his PA) brushed me off the moment he realized that I already been through 3 heart cathterization (they wanted to do ablation).

Yes, I take few meds but the only one for POTS is Tenormin.

Thank you for your kindness.

Add me to your list! Yes, but I don't know why.

Hi katT,

I can't tell you take it or not, but here are the side effects for it:

What side effects can this medication cause?

Topiramate may cause other side effects. Tell your doctor if any of these symptoms are severe or do not go away:

• 
  numbness, burning, or tingling in the hands or feet
  
• 
  slowed reactions
  
• 
  difficulty concentrating
  
• 
  speech problems, especially difficulty thinking of specific words
  
• 
  memory problems
  
• 
  lack of coordination
  
• 
  confusion
  
• 
  nervousness
  
• 
  aggressive behavior
  
• 
  irritability
  
• 
  mood swings
  
• 
  depression
  
• 
  headache
  
• 
  drowsiness
  
• 
  weakness
  
• 
  excessive movement
  
• 
  uncontrollable shaking of a part of the body
  
• 
  uncontrollable eye movements
  
• 
  extreme thirst
  
• 
  weight loss
  
• 
  constipation
  
• 
  diarrhea
  
• 
  gas
  
• 
  heartburn
  
• 
  change in ability to taste food
  
• 
  swelling of the tongue
  
• 
  overgrowth of the gums
  
• 
  dry mouth
  
• 
  increased saliva
  
• 
  trouble swallowing
  
• 
  nosebleed
  
• 
  teary or dry eyes
  
• 
  back, muscle, or bone pain
  
• 
  missed menstrual periods
  
• 
  excessive menstrual bleeding
  
• 
  skin problems or changes in skin color
  
• 
  dandruff
  
• 
  hair loss
  
• 
  growth of hair in unusual places
  
• 
  ringing in the ears
  
• 
  difficulty falling or staying asleep
  
• 
  swelling of the hands, arms, feet, ankles, or lower legs
  
• 
  difficulty urinating or pain when urinating
  

Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

• 
  blurred vision
  
• 
  double vision
  
• 
  eye pain
  
• 
  worsening of seizures
  
• 
  slow heart rate
  
• 
  pounding or irregular heartbeat
  
• 
  chest pain
  
• 
  trouble breathing
  
• 
  fast, shallow breathing
  
• 
  inability to respond to things around you
  
• 
  excessive tiredness
  
• 
  nausea
  
• 
  vomiting
  
• 
  stomach pain
  
• 
  loss of appetite
  
• 
  intense back or side pain
  
• 
  bloody, cloudy, or foul-smelling urine
  
• 
  constant need to urinate
  
• 
  fever
  
• 
  chills
  

Topiramate may cause osteoporosis.

Does anyone else have this problem?

I have been suffering from this all my life, I have tried different things but it keeps happening no matter what.

Despite dietary changes, eating small meals and other things, I still suffer from the symptoms of this syndrome such as:

.Feeling of hunger and sugar craving

• Shakiness
  
• Anxiety
  
• Difficulty to concentrate
  
• Exhaustion
  
• Faintness
  
• Thanks in advance for any input.
  

Elegiamore,

Thank you for your input.

Sorry, I can't pay those huge medical bills, travel expenses out of my pocket , I have a part time job.

Yes jpjd59, it was a research center that said that to me in an email! but it is not in my state.

Yes Kimbellgirl, it is very sad.

Participating in a Dysautonomia research!

Since there is no POTS Dr in my state and having no hope to be seen in one of the autonomic centers (my insurance

won't approve it), I decided to take 2 weeks off from work and help my peers and researchers, but sadly, I did not meet

their age criteria.

I know very well that doing such thing will not be easy nor fun but I really wanted (before I die) to be seen by one of those

POTS experts here in the US beside the great feelings I could have had from serving humanity.

Now I am left with no other options and all a lone with my symptoms and sufferings.

Please help if you have any suggestion.

I have never taken it.

Go to: http://www.tardivedyskinesia.com/causes/flunarizine.php

Oh, regarding the Heart Rate, I have the same problem despite trying many types of meds. They are either not effective or I can't tolerate them and others have really bad side effects.

Trust me diamondcut, today, yes today, I was thinking of one of my friends in London (he is a plastic surgeon and a director of a hospital inside London), if I email him my medical reports so he can show them to a POTS Dr., just to see if they have a different treatment plan there for me!

1st of all, you are in the right place dear, I mean this forum, hope you will find some answers and some friends!

Regarding Botox, I had 15 ones of them in less than half an hour and since I am extremly sensitive to pain, I decided not to have them again until I die! The shots were like bee sting and worse!

It took exactly 32 days and then I noticed its effect but it helped me for 3 months; I had the migraines less in tension and less frequently.

Have you tried Relpax (Eletriptan) which might be under a different name in London? it is my life and my job saver! ! it works like magic for me, after I tried tens of other meds for more than 20 years!

Another thing that had helped me is magnesium glycinate which is good also for better sleep and preventing constipation.

Feel free to pm me if you want more details.

Take care.

Every day!

They both really making me feel worse.

The only time ever in my life when I felt not only better but great and normal was during pregnancy! ! ! (I am really serious) but I had only one pregnancy.

Hi jenglynn,

I am glad you have a great family.

I don't know if you have done the interview or not, but my only point is you can refer to this website if you want!

mama_destiny,

Could you please pm me? I think we live in the same state according to the DINET meet others.

I emailed you, but I never got a reply!

According to Dr. Grubb, POTS and Inappropriate Sinus Tachycardia are two clinically different entities but with significant overlap of symptoms.

You can find some answers in this link:

http://resources.metapress.com/pdf-preview.axd?code=d5454376431n1856&size=largest

I was deeply thinking about this, and then Googled it, I found this old artical about it, I would like to share it with you guys:

http://hyper.ahajournals.org/content/30/1/71.short

I found another one which is not old!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3077350/