McBlonde

So, with all these issues - what do you do for them? Is florneff and salt your only solutions? Do you also use DHEA or pregnonolone? I asked my husband last week about going to him. He said we could. He works in LA some of the time, so it wouldn't be hard to get there. He must be taking insurance now, because he came up as a provider for my insurance. First, I think I'll continue with the neuro visit I have scheduled and if that doesn't give me the answers I need - then he will be next Sorry, I left that part out! For my pituitary failure: estradiol, progesterone, testosterone, and thyroid meds. For my adrenal failure: DHEA and Florinef with Thermotabs. Plus I took Klonopin and 25 mg of Trazadone for restorative sleep. That regimen kept me upright from 2003 until August of 2009. For reasons unknown to me, last August I started having headaches and nausea that appeared to be orthostatic in nature. I don't know if my symptoms are from my HR rising (last time I was in the shower when I got out my HR was 168), but when I got downstairs and took my BP, it wouldn't register it had dropped so far. Chicken or the egg?? Either way, neither is "normal". Hope this helps.

No, it wasn't, but that IS what Dr. F thought would be eventually happening. Hypopituitary with secondary Addisions. However, even though my sleep cycles are reversed, my cortisol levels have remained normal these past 20 years. I also forgot to add that my DHEA-S were very low. DHEA is also made in the adrenal gland. I guess my messanger system is really messed up.

Issie, I would say that he was like the Dr. House of neuro-endocrine issues. He trained at NIH and also has a Phd in pharmacy. It took me a while to figure out that MOST endocrinologists only know about diabetes and thyroid issues, nothing about the pituitary or the HPA axis or the autonomic system. He ran all the very specific neuro-endocrine hormone tests and discovered I had hypopituitarism, hypoaldosteronism, and hyporeninism. The neuro-endocrine hormones that I was abnomally low in were growth hormone, estrodiol, progesterone and central hypothyroidism, low aldosterone, and low renin. I had very low BP and a huge rise in HR after I stood up for 3 minutes. So I guess I know the reason for my orthostatic intolerance......the low aldosterone and low renin caused by a dysfunction of the autonomic nervous system. It was 7 years ago that I saw him and after he did his testing and got the right horomones supplemented along with taking Florinef with salt, I was able to go from severe fatigue on bedrest to being a good bit better.....not able to go back to my previous work, but able to function. My problems became severe again last August when I started having headaches and nausea. I couldn't think right. I would get lost trying to drive home from work. They thought I had a CSF leak because the symptoms are so similar. Before I had the myelogram, I saw Dr. F and he said he thought it was going to be from reduced blood flow to the head. Turns out he was right. A local doctor here that used to research POTS, took my HR standing up and after 3 minutes it was 148. He said I had POTS, however, I think there is more to it. I have caught my BP dropping while I was sitting down, which probably explains the brain fog when driving, etc. So, something changed that caused me to have uncontrolled BP dropping. I guess something didn't change....I know about the low renin, low aldosterone. I guess it was my body's response got worse. I don't why that is yet. He's not a POTS specialist, but if your root cause is pituitary or adrenal, he will be able to diagnosis that for sure. He is mainly a researcher and only sees patients one night a week in LA. After you see him he will do follow ups by email or phone if needed. Because he is mainly a researcher, he prefers to figure out what is wrong and then turn it over to your local doctor. He does not take insurance. I believe his new patient charge is $425.00. Knowing if he is the right doctor for you really depends on if it's your neuro-hormones on the blink. For other causes of orthostatic intolerance, he would not be the right doc. I hope this helps somewhat. I appologize in advance for any typos and sentences that sound stupid. but I am brain dead now, lol.

I don't know if this will help in ya'lls discussion on the aldosterone/renin axis, but it helped me understand. I go to a neuro-endocrinologist and there is a very specific way to test aldosterone and renin. When my results came back, I had both low aldosterone and low renin, which Dr. F finds in about 1/3 of his patients. This describes me: Soon-to-be-published research by Dr. Friedman shows a few patterns of abnormalities in the renin-aldosterone axis. A little more than half the patients with fatigue had low blood levels of both renin and aldosterone. This is called hyporeninemic hypoaldosteronism and is probably due to dysfunction of what is called the autonomic nervous system, which sends messages from the brain to the kidneys. http://www.goodhormonehealth.com/youradrenal.pdf I hope this paper might help someone.

Gosh, I have such brain fog!! It drives me crazy not remembering stuff. I just remembered that it was TXPOTS that told me about the other thing in IVs that helps it last longer. TXPOTS -- if you see this thread will you tell us what you learned aboout IVs? Thanks!!

stabilize my blood pressure, get rid of my excruciating headaches That is wonderful that it worked for you! I was wondering how it changed your BP? Mine drops 30 or 40 points and then shoots back up. It would be awesome if it would control that, but you may mean that you had high BP? TIA

Poohbear, we are in real trouble when Medicare doesn't accept Medicare assignment! LOL, that's the way my brain works now, too, (make that.. doesn't work). What can we do but laugh. Seriously, though, I went to their website and saw what you are saying. Also when I Googled Mayo Medicare, there were some interesting local newspaper articles responding to the Jacksonville clinic's "business" decision.

Was it Vasovagal syncope or a vaso response?

I would love to see that. Do you have the link? Also, I have read so much good info from Johns Hopkins. I so wish that they treated adults. I am correct in thinking they don't see adults,aren't I?

I am hoping someone has it in their treatment plan and can quote it. I think that there is something that they are putting in the IVs now, but I can't remember what nor how I know that. I wish I understood the mechanics of why the IVs work better than all the Gatorade, water, salt, V8 etc. that I drink.

Wow, I had no idea this was an issue with Mayo! It's very important to know which post is correct....1 or 2. If Mayo has not signed a contract with Medicare to accept assignment, then that is a everyday example of rationing of healthcare to the more affluent. If Mayo has NOT signed a contract to with Medicare, then the bill could work like this example: Before I posted, I verified with Mayo that they DO NO ACCEPT MEDICARE ASSIGNMENT: From Mayo: When claims are sent to Medicare on a non-assigned basis, the benefits for the services are sent directly to the patient. Mayo Clinic is entitled to bill the patient for the difference between our billed amount and Medicare's approved amount. We do not have to accept Medicare's approved amount as payment in full. So if your bill is $50,000 and Medicare's normal payment to contracted providers is $5000, then you are responsible for $45,000. If you have supplemental insurance, you should check with them. Some will pay what Medicare doesn't but just as many will only pay the 20% of the Medicare allowable. This is a trend I saw starting in CA about 7 years ago with many of the sub-specialist no longing accepting ANY insurance payments. My neuro-endocrinologist is cash up front. Scary isn' it.

I would love to know the answer to the OP's question, too. The last time I felt "good" was when I was last November when I was in the recovery room after a myelogram to check for a CSF leak. After having had a needle in my spinal column, my family expected me to look like I was on death's door, instead my face was rosey and I was chatty. The only thing I was on was IV fluid. It was like a brief miracle.

Hi! I'm not Beliver but my pressure headaches are on top of my head. They feel like I have a tight rubber band around my head squeezing really tight.

Benny, if I were you, I would go to Mayo's Autonomic Center. Here's the link: http://www.mayoclinic.org/neurology-rst/autoneurogroup.html. I checked with NIH and for a diagnosis, they recommended Dr. Low at Mayo. Since I am in Louisiana, they recommended Dr. Suleman in Dallas to me. They told me their researchers work a lot with both of them. Also, they did recommend absolutely that a patient go to an autonomic specialist in order to get diagnosed with the specific autonomic disorder that they have. Will your dad support you in going to a place like Mayo?

Hi Benny! I had the exact same experience at the gym! This was back in 2000, before the fatigue hit me like a truck, anyway, before that, I worked out at the gym at least an hour a day. I could do the treadmill, bicycle etc. but not the stair-master. I couldn't do it. I never knew why and I just put it together when I read your post. The last time I had syncope was there at the gym. I was finished exercising and was standing in front of the towel rack. I suddenly felt like I was going to black out, so I laid down. They immediately took my BP and couldn't get one. They called 911. The EMTs arrived and I remember hearing them as if they were far away saying they couldn't get a BP. The paramedics came in and got me in an ambulance and, I'll never forget this part, they said..."hold on, this is going to hurt." They used a large gauged needle and had the fluids going wide open. I stayed in the ER for a couple of hours. When I was discharged, my BP was still only 68/48 and my discharge diagnosis was anxiety. I do have endocrine problems that may be at the root of my problems, but I am going to schedule a tilt table test for more information. The horrible headaches were the last symptom to hit me. I am hoping that some info gained from the autonomic specialist will help me get control of these headaches which have turned out to be disabling. What part of the country do your live in? I was a hospital administrator before I got sick and I am just amazed at how few places there are for diagnosis. Hope you find answers!

TXPOTS, I have had this symptom, too. Did your endo check your estrogen levels? When I was on Estrace, the symptom completely went away.

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!

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!

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.

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

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?

I don't know, Lois. I have had so many side effects with the pills I have tried so far. The last time I felt "good" was in November after I had a myelogram and they have me an IV in recovery.

Oh my gosh, he is the one that dx'd my POTS in November and Octreotide is what he wants me to try next. Isn't it given by injection? He's practicing at LSUMC now.

I can't take it either because it gave me bad headaches. I took Florinef for years and had no problem. Then, in August, when all this POTS stuff started (or rather, I was dx'd) suddenly, Florinef made me have headaches. So far that's Florinef, Midodrine, and Mestinon all give me bad headaches. What is it that they all have in common that would do that?

I am so sorry!! I do the exact same thing there. For me, it's the altitude, the dryness of the air, and change in temperatures from the warm days to the cold nights. It's funny though, because I know some people do much better in CA. I guess you and I are some of the few that don't. I really hope you feel better and are able to finish your trip!