Dr. Amer Suleman

[McBlonde]

Has anyone here been to Dr. Amer Suleman at the Heartbeat Clinic in Dallas?

[McBlonde]

I guess no one has seen this doctor. I am surprised. I expected someone would have since he is a medical adviser for DINET Web site.

[sue1234]

I saw him. He is very thorough and nice(staff is nice, too!). I went through a battery of testing, but, unfortunately, just recommended a alpha blocker. I am way too sensitive to alpha blockers(or betas, for that matter). But, lots of testing to see exactly what your body is doing.

[TXPOTS]

Dr. Suleman officially diagnosed my POTS. I agree with the above poster. He and his staff are definitely compassionate. I wish that I lived closer, so I could take advantage of the PT consultations, dietician, and other services. He diagnosed my POTS, but he recommends follow up and treatment in your hometown, which can be a challenge since there are so few physicians that understand POTS. I would recommend him for an accurate diagnosis and autonomic testing.

[McBlonde]

I am sorry I haven't been back on to say thanks so much for your responses! I appreciate hearing your experience.

I haven't been on lately because I have tried to stay up all day for the last few days, but I get an excruciating headache after I get up and it doesn't stop hurting until I take something and lie back down.

I have both a big drop in BP(drops to "too low to read" on my monitor) and a big increase in HR (up 45 or 50 pts.) when I get up.

I can't figure out if it's the low BP or high HR that is causing these headaches and why they continue even after the BP and HR stabilize.

Any idea?

[janiedelite]

I'm sorry you have to deal with these headaches. It sounds like your headache is probably from lack of appropriate bloodflow to your brain. I'm sure you're already doing this, but it can help to drink a large amount of fluids prior to getting up, wear compression, get up slowly, etc.

I have to take nitro occasionally for my chest pain which causes this type of headache as well. It's horrible because there's nothing that can be done for it, except lie down.

[McBlonde]

Does that mean that the headaches are continual because as long as I am upright, the blood flow is too low?

Thanks!

[TXPOTS]

Does that mean that the headaches are continual because as long as I am upright, the blood flow is too low?

Thanks!

I just wanted to sympathize with you. Orthostatic headaches have been the absolute WORST of my POTS symptoms. I find that instead of lying flat (which can decrease blood volume further over time) I can lean my head back in a recliner or rocking chair. The headache then goes away, but it is really, really awful. I still can't shake these headaches. I was initially misdiagnosed with a low spinal pressure headache, but finally was redirected by a world renown spinal leak specialist to my correct diagnosis, hypovolemic POTS. Dr. Suleman, in fact, explained that low blood volume to the brain can cause these headaches, as well as tension. Some POTS patients tend to tense up when upright. Hugs. Hopes for a better week.

[sue1234]

I definitely tense up when upright, and sometimes I think it is hindering my blood flow to my brain! I have almost come to that conclusion lately. It seems like if i would just be able to relax that maybe my b/p wouldn't go up.

[McBlonde]

Does that mean that the headaches are continual because as long as I am upright, the blood flow is too low?

Thanks!

I just wanted to sympathize with you. Orthostatic headaches have been the absolute WORST of my POTS symptoms. I find that instead of lying flat (which can decrease blood volume further over time) I can lean my head back in a recliner or rocking chair. The headache then goes away, but it is really, really awful. I still can't shake these headaches. I was initially misdiagnosed with a low spinal pressure headache, but finally was redirected by a world renown spinal leak specialist to my correct diagnosis, hypovolemic POTS. Dr. Suleman, in fact, explained that low blood volume to the brain can cause these headaches, as well as tension. Some POTS patients tend to tense up when upright. Hugs. Hopes for a better week.

I've had low blood pressure and orthostatic hypotension for years and years. I started being treated with Florinef in 2003. Suddenly last August I started having terrible headaches and then nausea. I had everything from scans to a spinal tap done looking for a CSF leak. After that I happened to see a doctors who used to research POTS and that's what he said I had because my HR would go from 72 to 140 when I stood up, but I am confused because my BP also drops from 98/60 supine to 64/0 when I stand.

Back in August, I was at least able to sit in the recliner, but now, I am even having blood pressure drops sitting down. The medicines they have tried all made my head hurt worse. I drink 2 L of water, bottles of Gatorade, and some juice every day, but that hasn't helped. When the headaches come on, I can't do anything......read the computer, concentrate, nothing. It's bad when you feel too bad to fill our your disability application.

[Brye]

What type of doctor are you seeing now? Just wondering? I've been debating on seeing an autonomic specialist as well. Trying to decide if it's worth it. I guess you really never now until you've handed over your life savings! Hope you start feeling better soon. I haven't had the HA problems. I guess I have that going for me!

Brye

[TXPOTS]

Did you have a CT myelogram? I see you have low pituitary hormones. Do you also have diabetes insipidus. I assume not if you only drink 2 liters/ day, unless you are on DDAVP. It's really hard to differentiate between hypovolemic POTS and a spinal leak. Sometimes spinal and cranial leaks are hard to detect, and it is now being documented that they can cause autonomic dysfunction and pituitary hyperemia. However, you have had orthostatic hypotension for years before these headaches and a negative work up for a spinal leak already. I was like you at one point, and I gradually was able to be upright in a bed and then in a recliner and now for several hours off and on during the day. I found the more and longer I was down the worse I got, but if I pushed it too much, the headache could get horrendous. In the end, we learned I was severely dehydrated. Maybe it's time for an autonomic specialist to get you over this hump and evaluate your volume status. If you are hypovolemic, there are more options than just the Florinef. I know it's frustrating. I had the nausea too at one point. I really, realy do sympathize. Better days are ahead.

[McBlonde]

What type of doctor are you seeing now? Just wondering? I've been debating on seeing an autonomic specialist as well. Trying to decide if it's worth it. I guess you really never now until you've handed over your life savings! Hope you start feeling better soon. I haven't had the HA problems. I guess I have that going for me!

Brye

Hi Brye!

I see a neuro-endocrinologist in CA. I had never heard of POTS until this past January. I am now looking at which autonomic specialist to go to. I would love to go to Dr. Fred Kusumoto at Mayo in Jacksonville because of all the great things I have heard about him on here and especially because he's in FLORIDA and I would love to breath some of that ocean air! However, Dr. Suleman is only 3 hours away and he sounds good. The National Institute of Health called me yesterday about one of their studies and they recommended him as somebody good that was near me. Maybe he can make the headaches go away and I can make it to Florida sitting up!

[McBlonde]

Did you have a CT myelogram? I see you have low pituitary hormones. Do you also have diabetes insipidus. I assume not if you only drink 2 liters/ day, unless you are on DDAVP. It's really hard to differentiate between hypovolemic POTS and a spinal leak. Sometimes spinal and cranial leaks are hard to detect, and it is now being documented that they can cause autonomic dysfunction and pituitary hyperemia. However, you have had orthostatic hypotension for years before these headaches and a negative work up for a spinal leak already. I was like you at one point, and I gradually was able to be upright in a bed and then in a recliner and now for several hours off and on during the day. I found the more and longer I was down the worse I got, but if I pushed it too much, the headache could get horrendous. In the end, we learned I was severely dehydrated. Maybe it's time for an autonomic specialist to get you over this hump and evaluate your volume status. If you are hypovolemic, there are more options than just the Florinef. I know it's frustrating. I had the nausea too at one point. I really, realy do sympathize. Better days are ahead.

Yes, they numbed my back, then put the needle in to withdraw some spinal fluid for testing, then they put in dye and did an extensive scan of my spine and brain. It was a top facility and they were very thorough. After that, they sent me to the recovery room for a few hours. The funny thing is that was the last time I felt good. Now I realize why......it was the IV I was getting in the recovery room.

I forgot to add before, along with the pituitary problems, I also have low normal aldosterone and very low renin levels. Mine was .32 and normal is 1.9 to 3.7 ng/mL/hour. I think that's why I am so thirsty. Even though I drink 2 L of water, 3 bottles of Gatorade and other fluids daily, the problem with the renin keeps my body from being able to hang onto the fluid.

How do they diagnosis hypovolemia and do you know if Dr. Suleman does that testing in his clinic?

Thanks for your help and encouragement!

[TXPOTS]

Did you have a CT myelogram? I see you have low pituitary hormones. Do you also have diabetes insipidus. I assume not if you only drink 2 liters/ day, unless you are on DDAVP. It's really hard to differentiate between hypovolemic POTS and a spinal leak. Sometimes spinal and cranial leaks are hard to detect, and it is now being documented that they can cause autonomic dysfunction and pituitary hyperemia. However, you have had orthostatic hypotension for years before these headaches and a negative work up for a spinal leak already. I was like you at one point, and I gradually was able to be upright in a bed and then in a recliner and now for several hours off and on during the day. I found the more and longer I was down the worse I got, but if I pushed it too much, the headache could get horrendous. In the end, we learned I was severely dehydrated. Maybe it's time for an autonomic specialist to get you over this hump and evaluate your volume status. If you are hypovolemic, there are more options than just the Florinef. I know it's frustrating. I had the nausea too at one point. I really, realy do sympathize. Better days are ahead.

Yes, they numbed my back, then put the needle in to withdraw some spinal fluid for testing, then they put in dye and did an extensive scan of my spine and brain. It was a top facility and they were very thorough. After that, they sent me to the recovery room for a few hours. The funny thing is that was the last time I felt good. Now I realize why......it was the IV I was getting in the recovery room.

I forgot to add before, along with the pituitary problems, I also have low normal aldosterone and very low renin levels. Mine was .32 and normal is 1.9 to 3.7 ng/mL/hour. I think that's why I am so thirsty. Even though I drink 2 L of water, 3 bottles of Gatorade and other fluids daily, the problem with the renin keeps my body from being able to hang onto the fluid.

How do they diagnosis hypovolemia and do you know if Dr. Suleman does that testing in his clinic?

Thanks for your help and encouragement!

I think I've met another version of me... lol. I was the same way. I always felt better after receiving IV fluids in the hospital, but I would spiral downwards at home. It's nice to meet someone who has the same type of headaches. My aldosterone was undetectable with barely there renin levels. If you were ON Florinef when they tested you, these levels would be low anyways. Hopefully, they drew the levels before they put you on Florinef.

Dr. Suleman figured out that I had hypovolemic POTS based on my history and the testing he did. I was very ill when I was there, so I went in the hospital a couple days and received IV infusions of saline (and albumin). The difference in my blood pressure and heart rate was dramatic. After I got back home, I found an endocrinologist who performed the renin, aldosterone and water deprivation test for diabetes insipidus. I then started Florinef and DDAVP. I am doing better now, but I am still stuck at a 5 (on a scale of 0-10). Like many POTS patients, I've had side effects from other meds they have tried. The newest issue is my bladder is acting up. They think I may have interstitial cystitis, possibly from all the salt I have been ingesting over the past 3 months or the increased concentration of my urine from treatment. It's a big IF though. Dr. Suleman does all the testing there.

Whatever the case... what you have, I have. I wonder if Dr. Suleman can come up with a plan for the headaches for both of us. You are describing exactly what I have been through with these headaches.