zaks27

Hi all, I have a question--has anyone been diagnosed as having thoracic stenosis and spondylosis and finding it as a cause of their POTS? I have severe mulilevel degeneration most severe between the T5 and T9 areas. I'm having nerve root compression symptoms (PAIN in surrounding soft tissue, chest pain), along with the POTS. Can this be the cause of my POTS? If those nerves are the ones that stimulate the heart, it would make sense to me. Any comments? I also have REALLY severe cervical stenosis and spondylosis that may be headed towards a discectomy and decompression. I have an appointment with a neurosurgeon at the end of the month. I want to try everything possible before considering surgery. It seems that the occurance of full relief of symptoms is pretty illusive. 30% get better, 30% worse, and 30% stay the same. Again, anyone else in this place? Thanks so much for any input!!! It's really tough when there are so many overlapping symptoms.

Have you had an ENG to diagnose where the vertigo is coming from? An audiolodist does the test, and can diagnose where the vertigo is coming from in the inner ear--or if it's a brain problem. Then they can teach you exercises to settle the calcium crystals in the semi-circular canals which cause the vertigo. Google "vertigo" and you can find these exercises online. I've found when the vertigo starts it will "fatigue" and doing the exercises has helped tremenously. Good luck--I know personally how terrible this is.

Just a follow-up. I had an ENG at an ENT office and find I have "torsional" nystagmus. My eyeballs are actually are going in circles! I was taught exercises to settle the calcium crystals in the inner ear and am doing much better with the vestibular symtoms. Also my massage therapist found a ligament in my neck that she said was related to vestibular problems--it was like a tightened bowstring--she worked on it and again it really helped my symptoms. Hope this helps anyone who may be having simular problems.

Hi! I've had IBS with diarrhea since the late 1990's. I see that you're a latte lover too. Don't you find a bout of diarrhea follows the coffee? I swear I could use my one cup of morning coffee as a laxative! I keep anti diarrheal pills on hand and take as needed (like when I have a doctors appt.) Fiber is also a great idea as mentioned earlier. I started on Doxepin several months ago and find it helps a bit--with the IBS, sleep, and restless legs. I take 50 mg at bedtime. Stress is also a definite causitive factor. Good luck--I know how inconvient (and uncomfortable) it is.

I was lucky also. I'd done my homework and fit POTS to a "T". Being a RN helps when I went into my doctor's office and told him "let's not waste time--I think it might be POTS." I got a referral to a cardiologist and the TTT was done within a month. I knew it'd be positive--you can do your own testing by just laying supine for 10 minutes or so, and then standing still and taking you pulse and BP every 5 min. or so. I have pre-syncope--I've never actually fainted. I'd say start of symptoms to diagnoses was 3 months total. I know, I was REALLY lucky. Thank God I have a doctor who respects my opinion...

I just remembered--the nurse when I had my TiltTT gave me a cup of coffee while I was laying there (shaking like a leaf) after the test. It helped tremendously--even though it was lousy coffee;=) My impression was they gave this to all TTT patients post testing.

I'm an RN with 30 years experience and I swear, I have trouble finding my radial and carotid pulse all the time! I think it's because it's going so fast--kind of "thready". I've also been told I have a tendency to throwing PVC's (that missed beat phenomenon) and some bigeminy (missing several beats) also. I freak out so much, I've stopped trying to take it!

Wow--thanks "thankful" for the heads up on "coat hanger" pain. That describes me to a "T"! I was rear-ended in '88 by a Caddy going 45 mph while I was in my Honda stopped at a red light. I've never been the same since. Lately I too have been having horrible pain in my neck radiating to the deltoids, numbness, and hand tingling and numbness. I can only sleep on my back. I haven't had an MRI in 10 years (last MRI showed spondylosis with soft tissue touching the spinal cord in several places) and was just scheduled for another MRI on the 24th. They took X-rays first and surprise--they also want to do the thoracic and lumbar area. The thoracic pain radiates to the chest and if I didn't know it wasn't a heart attack (I've been recently tested thoroughly), I'd be in the ER everyday!

I HAVE to drink one cup of coffee a day. Without it I feel lousy and really feel it helps the pre-syncope, lightheadedness and fatigue!

I've been dealing with vertigo along with POTS (pre-syncope, light-headiness, exhaustion, and tachycardia) for about 10 months now. We finally (my PCP and I) decided we needed to document my episodes of vertical nystagmus and then appropriately refer to a neurologist or neurosurgeon. There is a possibility of Arnold-Chiari malformation, or other brain lesion. I'm also a long standing victim of cervical spondylosis and new MRI's (last ones were made 10 years ago) will be happening soon, as I do have many symptoms (and old MRI's show touching of soft tissue to cord) of cord impingement. My question is--how awful is an ENG? Vomiting? Nausea? My episodes at home last literally only a few seconds, intermittently and I don't experience nausea or vomiting--even when the vertigo feels like I'm being thrown across the room. I'm not looking forward to this. Any suggestions? I'm already sweating having to discontinue most of my meds for 48 hours prior to testing. What were your experiences? Thanks so much for any information you can give me, Susan

Hello Reen and Brenda! Thanks so much for your replies. I did search on the forum for "vertical nystagmus" and "nystagmus" and though it is a fairly common phenomenon, I only found one mention of 'vertical nystagmus" without any mention of what the causative factor was. I know BPPV can be treated with head tilting exercises (my hubby and I have tried doing them at home--the procedure is on several sites online). The exercises haven't been very successful. My concern was whether anyone with the vertical eye movements (bouncing like a ball) indicated something different from the horizontal movements, most often referred to. The thought of Chiari or some other brain malady is frankly freaking me out. The process in getting appointments is going to a long, drawn out procedure since I'm on a Medicare Advantage Program and everything needs a referral. I see my "gatekeeper" PCP next Thursday. I don't even think a neuro-ophalmologist is on the HMO list--at least not in Spokane! I guess I was just looking for some comfort that it's just the dysautonomia and not to sweat it... Thanks again!

Hello everyone! I'm a Newbie, although I've been lurking for months. I was diagnosed with POTS after my TTT in June. My symptoms started in March and my PCP didn't know what was going on. He even brought in a medical student (LOL) to work me up after his exam. Anyway, I was referred to a cardiologist who did the Holter, 24 BP cuff, treadmill, heart scan and Tilt. I was diagnosed with sinus tachycardia and POTS. Pinolol didn't help (slowed my heartrate, but bottomed out my BP), and Florinif wasn't very helpful either. I'm now on Midodrine 10 mg every 3 hr. while upright. It's not helping much anymore--I've never had my BP go above 118 systolic (even laying down). I also use 40 mm compression hose. BTW--I believe the cause of my problems was bariatric surgery I had in Feb. of '09. I've lost 112 pounds since the time of surgery. So, here's my question: I have, like so many of you pre syncope, lightheadedness, dizziness and vertigo. I haven't seen and ENT for an ENG yet, but I can bring on the vertigo easily just by positioning my head. I figured it was just BPPV and didn't think an ENT could be of much help. When I have my vertigo, it's short-lived--lasts maybe 3-4 seconds--but can be very violent. I've noticed my eyes bounce up and down when this occurs. Does this happen to anyone else? I always thought of nystagmus as being horizontal. When I Googled "vertical nystagmus" I found it could be serious. Any comments from anyone with this symptom? I see my PCP next week and will probably go ahead and get a referral for an ENT visit. I guess I figured I shouldn't worry too much if everyone else has the same symptom. Thanks so much for your help. Hug to all!

Best of luck--stay calm and answer the questions honestly like said earlier. Do you have a SS lawyer? Chances are, if you do, you'll sail through the proceedings. I've been on SSD since 1997 (for rheumatoid arthritis and fibromyalgia) and receive a letter every five years or so asking when the last three doctors appointments were and for what. I get a letter back saying nothing else is required and my benefits continue. I've never had to send in any medical records or other proof of disability since '97. Now that I have POTS (at age 58 no less) I can't imagine ever losing the benefit. I can hardly get out of bed now! BTW--Another thing SS does is it sends you notices every once in awhile telling you that you can work up and make up to $400/month without penalty. They also encourage people to try working again, and if you can't do it you won't lose benefits. Again, best of luck, it's stressful but worth it especially when we can't function let alone work.

Hmmm--I've been dealing with pain in the upper right quadrant also. Mostly mild to moderate. I had a cholecystectomy back in 1996--so it's not the gall bladder. I was seen in the ER for chest pain last summer that was relieved by nitroglycerin. I was told the nitro works on esophageal spasms (which was probably the cause of the chest pain. ) Your mention of gastroparesis is interesting. I had a vertical sleeve gastrectomy in 2/09 for weight loss. Now I'm wondering if I'm having problems with restriction of the pylorus or a problem with the vagus nerve. My only symptom is the pain. No nausea, vomiting. I 'm pretty sure the gastrectomy and subsequent weight loss is the reason for my POTS. Nothing else makes sense. Thanks for the heads up and hint on the possible cause!

Yuliya, I'm so sorry you're having problems. I too, have insurance that won't pay for certain medications. I usually bring my insurance prescription drug catalog with me to all my appointments. I'm addicted to benzodiaziprines and won't take anything like Ambien or Lunesta. It's been impossible for me to get off Valium (I'm only taking 5 mg now at bedtime) as any reduction causes panic attacks and suicidal thoughts. What I am taking is 50 mg of Doxepin (a $5 co-pay) at bedtime along with 3 Valerian Root capsules (which I purchased for $4 at Walmart). I was up every night at 3 am for about 2 hours prior to taking these meds and even I'm surprised how well I've been sleeping now... Sure hope you get some relief soon,

Hi! I'm a "newbie" also. I've been on Midodrine (generic) since last September. My initial dose was 10 mg. twice a day. It really seemed to help--but in looking back, I also began wearing compression hose at the same time, and think that the hose is what really what made a difference. I'm used to the "pylo-erection" (goosebumps) now--although its tough not being able to shave my legs. I was on the twice a day regimen because I just wasn't out of bed enough and doing my "daily life" long enough to take it 3 X daily. I saw my cardiologist yesterday and I'm going to try 10 mg every 3 hours while upright. I've never had an issue while laying down with my BP going above 118/74--so the precautions against taking it and laying down seem a moot point--but I don't want to tempt fate. Seems the only time I get out of the house now is for doctor appts. and occasionally dinner (once a month at most.) If anything the Midodrine and the stockings have lessened the pre-syncope--which is fantastic. But I'm still dizzy with short bursts of vertigo, moderate pre-syncope and exhaustion. I 'm going to stick with it--I'll see how 30 mg/day works this coming week. Good luck! Susan