... was 64/43 ... I take the Spironolactone to control my BP spikes

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In a message dated 4/17/2006 6:49:54 A.M. Eastern Daylight Time, shahall@... writes:

You have been diagnosed with PA?

No. I have had high BP since early childhood. I always recall having to take potassium tablets. I have had low K for over four decades. I've taken Kdur 40 MEQ for over a decade until the end of December 2005. That is when all my BP medications were stopped and Spironolactone - 25 MG started. Note: I have the same BP as my late mother. All I knew about her was how her BP was always over 200 and that if would get too low and she would faint. I know she had to take K supplements. She told me that none of the usual mediations worked on her. I have a first cousin who has the same up and down BP like me. A lot of my family have hypertension.

>>If 25 mg Spiro makes you hypotensive I don't understand why you need it.

I am now getting 221/153, 220/156, 236/163, 231/168, 236/153, 235/158, 233/170, 230/158. This is much better than my 305/188, 226/201 or 264/200 in say March 2005. In 2004 I was 305/200, 304/204. 306/206. 303/216, 309/200 with a lot of 200/200 levels. Controlling the Hyperreflexia seemed to be the key. Again, no one is asking why I have such high BP. Recently, in collecting and reading my old labs and medical records I am finding omissions of my hypokalemia. Anyway, these recent months, I am having MORE of my normal BP and hypotension. But, I am still having the 200/160 range BP. Always those BP's are connected with the Gastro Intestinal (GI) issue.

My general doctor was hoping the new medicine would work on me in case I do have PA. Whether I have a type of PA she wants to hear it from the specialist. My old medical records seem to suggest high, normal and low aldosterone. I am diagnosed with colon duplication since 2003. It is my belief it throws off MOST labwork. With this in mind, and the fact that the Spironolactone would help my hirsutism the doctor agreed to prescribe it. She is not touching whether I have PA or not. I learned about PA and HTN and low K from this website --- thanks Dr. Grim. Note: I saw my hypertension specialist in 2000. He and my Endocrinologist did various tests but the values were abnormally low. At one point they wrote Cushing's. Do Cushing also have low K?

If I do have Ehlers-Danlos Syndrome (EDS), hypotension is normal. To have EDS and hypertension is rare, unless it is secondary hypertension. I know I have hypotension. I have POTS, and OI symptoms. Blood pools excessively in EDS people due to stretchy arteries and veins. The above low BP does not bother me ... most of the time. I just got a copy my current Disability papers. Each year I have to renew and must see my doctor. I was a little surprised to see the doctor wrote she gave me the Spiro for my bread :-(.

As my BP creeped up over the years the code changed to Malignant hypertension. As I learned to do my own research, it was found that I was actually having BP spikes. The low BP they never got in the office. So there I sat. No one had a clue as to what was going on. Finally, it was found that the very act of sitting was the problem. Sitting, standing, moving, walking are all noxious triggers that cause my Dysreflexia. My currently disabilty papers state I should avoid completely: "Change of position".

The only thing I can do is see the genetics specialist. Everyone one is waiting for that. I am struggling to get my medical records prepared. It is very hard with my up and down BP. But, I am almost done. After a visit to adult genetics, I be able to answer your question better. I checked my BP at 7.56 PM. It was 226/162/90. I checked at 8.04 PM to make sure it was a spike and that I am not in crisis. It was 73/49/51. I was in the kitchen, standing and felt great. Oh well. So, I will take my Spironolactone to control the spikes later. The numbers I am getting when I spike mean it is time to take the Spironolactone.

Last July 2005 I was in ICU on Nitroprusside IV, Catapres patch, Nitro patch. They refused to believe I had Dysreflexia. They refused to call my doctors ... it was horrible. They instead spent days presuming I was delusional. When they found I had what I said I had they sent me home. At one point the doctors were scared I was having a dissection and gave me X-rays of the chest and abdomen. They knew I came in for the low K. After 4 days they let me go home without a discharge summary!!! I was thrown out basically!

When I finally got my discharge summary months later, I had to pay for it. The discharge summary said I had BP up to 300 and that they could find nothing wrong ... except for the fact I had my malformations. No one said a thing about PA. Yet, HTN, and hypokalemia were listed.

Caro.

History of Labile hypertension, and EDS.

With severe hyperreflexia and accelerated hypertension.