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Dale

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My name is Dale and I was recently diagnosed with POTS by Dr. Julian Stewart at the center for hypotension in New York. I participated in his CFS/POTS study because I was diagnosed with Chronic Fatigue Syndrome when I was 19 at The Mayo Clinic flollowing a one year Chronic EBV infection.I'll be 26 this year. He said I had some very unusual findings and some of the most peculiar data seen so far in such patients. I have a normal BMI but appear thin. During H.U.T. I had a 30 percent reduction of cerebral blood flow to my brain which was associated with a large degree of hypocapnia. Hr increased to over 130bmp. Heart rate variability was abnormal with increased low frequency peaks suggesting sympathhetic activation even supine.Blood pressure variability was also increased suggesting accentuated supine sympathetic baroreflex. Arm blood flows were high but leg blood flows measured by venous occlusion plethysmography were reduced and I may have the lowest blood pressure in my legs that hes ever seen. I appeared vasoconscricted. During my initial screening tilt blood pressure increased markedly to 160/94. Dr. Stewart informed me that all of this is consistent with a hyperadrenic form of POTS.I appeared pale.Extremities were cool or cold to touch. A measurement of peripheral resistance showed valsalva maneuver to be increased. Cutaneous blood flow was greatly reduced at rest with local heating which can result from adrenergic excess. Please note that sympathetic activity usually contributes substantially to resting vascular tone which is increased here.However patients with spinal cord transsection may have increased tonic vasoconstriction because of humoral forms of compensation. With 70 degree tilt there was progressive orthostatic hypertension with a large increase of tachycardia.Total peripheral resistance was increased as well. He sent off blood work which I have not recieved as of yet. He said the DAXOR blood volume assessment should be made a matter of medical necessity for me ( Dont have insurance) I underwent microdialysis with laser Doppler flowmnetry which revealed some very interesting data. Typically all data are normalized against an intradermal vasodilator response to sodium nitroprusside which was actually quite low with me indicating either intrinsic abnormality of the cGMP mechanisms within the vascular smooth muscle or a reduction in the number of my blood vessels. Such findings are unusual have never been observed in POTS or CFS subjects before. I had very poor thermal and acetylcholine responses in general which could relate to excessive norepinephrine. Nevertheless because of the relation of low flow to oxidative stress he elected to infuse me with large intravenous doses of ascorbic acid including small saline infusions. It appeared that vitiam C increased my resting blood pressure but worsened all other responses of cerebral blood flow and to tilt.This is highly unusual. I just had an MRS scan of my brain performed by Dr. Dikoma Shungu and it showed elevated levels of lactate acid. Anyone have any insight on any of this? I am unable to find a dysautonomia specialist in my area so I dont even know what medications I should be on and I Feel very sick. My symptoms include insomia,blurred vision,disabilitating fatigue,dizzines,black out spells,severe neck and back pain,stomach pain,tingiling and burning all over,palpations,post external malaise,muscle and joint pain,orthostatic intolerence,unrefreshing sleep,memory loss,nausea,weight loss,hot flashes,heat and cold intolerance, panic attacks,shortness of breath,loss of homeostasis,chest pain,lightheadedness, excessive/decreased sweating,numbness,muscle loss,weakness,poor body tempature control,flu symptoms,excessive thirst, ringing in my ears,alcohol intolerance and light and noise sometimes bother me more so then they should. I have gotten to the point were I'm pretty much just house bound and unable to work. I feel like I've had a really bad case of the flu for seven years and I'm starting to sink into depression. I was on a beta blocker and fludrocortisone not too long ago and my symptoms improved by at least 50 percent then I lost my insurance so I have just been taking vitiams and trying to stay hydrated.

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Dale -

Sorry to hear all this. :)

I recently went on a Beta Blocker and it probably helps me 40%, in combination with other meds probably 60%.

I take Propranonal...it's generic and even without insurance it's cheap. I think CostCo has a 30-day supply for around $10. You may want to go to a health clinic in your area, show them your POTS diagnosis, explain what helped you (Beta Blocker + the other I can't spell right now) and call around for a 'cheap generic.' These meds have been on the market for decades, my former Cardio told me, so the generics are decent.

Sometimes there's assistance for prescriptions too so don't be shy about calling for help...we NEED national Insurance coverage, it's so unfair, so please do what you can to help yourself. 50% better on a couple of medications is an excellent improvement, at least it was for me.

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Dale -

Sorry to hear all this. :)

I recently went on a Beta Blocker and it probably helps me 40%, in combination with other meds probably 60%.

I take Propranonal...it's generic and even without insurance it's cheap. I think CostCo has a 30-day supply for around $10. You may want to go to a health clinic in your area, show them your POTS diagnosis, explain what helped you (Beta Blocker + the other I can't spell right now) and call around for a 'cheap generic.' These meds have been on the market for decades, my former Cardio told me, so the generics are decent.

Sometimes there's assistance for prescriptions too so don't be shy about calling for help...we NEED national Insurance coverage, it's so unfair, so please do what you can to help yourself. 50% better on a couple of medications is an excellent improvement, at least it was for me.

Propranonal is what I was on. I didnt even know that CostCo offered prescriptions without insurance coverage so thanx!

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Dale -

Sorry to hear all this. :(

I recently went on a Beta Blocker and it probably helps me 40%, in combination with other meds probably 60%.

I take Propranonal...it's generic and even without insurance it's cheap. I think CostCo has a 30-day supply for around $10. You may want to go to a health clinic in your area, show them your POTS diagnosis, explain what helped you (Beta Blocker + the other I can't spell right now) and call around for a 'cheap generic.' These meds have been on the market for decades, my former Cardio told me, so the generics are decent.

Sometimes there's assistance for prescriptions too so don't be shy about calling for help...we NEED national Insurance coverage, it's so unfair, so please do what you can to help yourself. 50% better on a couple of medications is an excellent improvement, at least it was for me.

Propranonal is what I was on. I didnt even know that CostCo offered prescriptions without insurance coverage so thanx!

Here is the link to CostCo for checking prices of your RX:

http://www.costco.com/Pharmacy/frameset.as...mation&log=

100 40MG Propranonal is $7.11 for 100 pills!

I believe Wal-Mart also has a similar program - affordable generics for people without RX insurance.

Hang in there - people on the board are very helpful!

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Wow Thats cheaper then it would be with insurance.... Thanks for the link. I'm so happy I found this website! I can finally talk to other people who truely understand what i'm going through

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