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Posts (21)

Wed, Jan 22 10:09am · Living with Syringomyelia in Spine Health

Hi Justin, I understand that people are born with these in their system. Mine is in my cervical spine C2 to 7, I Belong to an organization in Texas you can read the newsletter ASAP.org Been a member since 1992. My pain started after a Trauma when I was 24. 1964 .I found out the problem in 1992. And MRI showed what I had. I have been on Neurontin since then. I Live with nerve pain my right trunk And extremity. The Neurontin help somewhat but, I can’t take too much of it ,makes me very tired and dizzy. There are groups around the countryhaving meetings. I am never without nerve pain . As I tell my doctor it runs from “stem to sternum.” Get yourself a very good neurologist who has knowledge of Syringomyelia. Years ago before 92 I was told it was in my head! Some neurologist have limited knowledge of Syringomyelia you don’t want them. Do you have Chiari malformation also? Syringomyelia & Chiari Project po box1586. Longview TX 75606-1586 Phone 903-236-7079 Get in touch with these folks also they can be a great help.

May 11, 2018 · Woozy feeling in Hypertrophic Cardiomyopathy (HCM)

Hi everyone, had Cath 4-23-18 with Dr. Naidu. He said my biggest problem is obstruction. ASA happening 6-4-18 Westchester medical Center, New York. I’m looking forward to it I’m tired of feeling this way. Had great care while I was there doctors very open And you can talk to him about anything. No stents thank goodness and he said I’m a good candidate. I’ll keep everyone updated.

Feb 26, 2018 · Woozy feeling in Hypertrophic Cardiomyopathy (HCM)

No sleep apnea Thank goodness.still on 240mg verapamil. BP still all over the place. I think, I need a higher dose of verapamil.walking more, The woozy feeling is gone. I see the local HCM Dr. April 3 to check how I’m doing on the higher dose .Bronchitis is over. Still very tired when I do anything.

Jan 26, 2018 · Woozy feeling in Hypertrophic Cardiomyopathy (HCM)

Yes, DilacorXR . Beta blockers cause me problems I have many allergies to drugs .HCM dr. Look at my list didn’t say a thing except to try 240mg to see if I could it. If not go back to the 120 mg one time daily.

Jan 26, 2018 · Woozy feeling in Hypertrophic Cardiomyopathy (HCM)

HCM doctor said my blood pressure was too high for my condition. He’s trying to get it lower .some days good some bad, it averages high 140s to high 50s. I try to take my pressure morning and night to see how it’s doing Recording it.Mid 90s I want to see a doctor, I was sick, my blood pressure was over 200 I can’t remember the other number she wouldn’t let me out of the room I was put on Delacor . It’s seem to be OK, Took for Nine years,but my pressure still wasn’t coming down much it still was in the high 40s the high 50 range. Other rx over the years. My local cardiologist put me on 120 mg veramilJanuary 17. HCM doctor thought it could be lower. As usual I’m all over the place. It might help with exhaustion. having a few lower readings. Right now I’m very sick with a bacterial infection in my head on anabiotic’s! I have no swelling of ankles or anything it’s just exhaustion. Little spells I seem to be having, the zoning out, I think about a month and a half, November and December, seem to be gone. My husband agrees .I was not on any drugs healthy except for exhaustion. Of course I’m an insomniac my whole life so I still have to wait for the sleep study don’t think I’ll get there on the 31st I’m too sick . No dizziness, etc. sorry for rambling all over but I have to do it in stages.

Jan 22, 2018 · Septal Alcohol Ablation in Hypertrophic Cardiomyopathy (HCM)

Hi, have an appointment February 23 with Dr. Naidu, how are you feeling? I’m 77 not really eligible for open-heart surgery. Too many other health problems. Hope by now you are feeling a difference. Keep us in touch in the best in 18

Jan 20, 2018 · Woozy feeling in Hypertrophic Cardiomyopathy (HCM)

Thank you,I’ve decided to see dr. Naidu, Westchester Medical Center, N Y. I want to see if he Agrees with my other HCM dr. Heart Cath. Exploration to see if i’m anatomically OK for alcohol ablation. I’m exhausted in the mornings when I get up. Like I’ve never gone to bed. Had a sleep study won’t know till end of month the outcome. HCM dr. Office had a lot of glitches I didn’t feel comfortable. Two months to reply if I should stop xeralto, didn’t know MRI phone #, gave three month supply of Verapamil240mg.I don’t know if I could handle it so it was a waste if I could not but, so far so good. There are other things also been there twice and all these glitches. So that’s why I decided to try Dr. Naidu. He has a good reputation and lots of procedures compared to New dr. So this is our think

Jan 17, 2018 · Woozy feeling in Hypertrophic Cardiomyopathy (HCM)

Hi, does anyone had the feeling that the plugs been pulled out of you, have absolutely no energy and feel off-balance not really with it? On a higher dose verapamil 240mg Two weeks. This feeling has been going on for at least a month and a half happens Four or fivetimes during the day.