cnm1

I emailed the FDA, Shire, and Mylan (the generic my daughter does best with). I will also contact my congressman. I can't tell you have much this scares me. My D was home bound for 5 years. With a cocktail of many drugs, she starts her PhD at Harvard next week. She can not function without it.

Louise

I don't think there are good substitutes. It should stay available in foreign countries. I think this must be fought - it has given my daughter her life back. This is all about money - it always is with drugs!!!

louise

This would be devastating for my daughter!! I encouraged everyone to contact the FDA - even if you don't take it. I am going to check for availability in foreign countries. This is an important drug for many with dysautonomias. We need to fight this - I know I will!!!

Louise

I haven't had much help from proamitine but it has definitely helped my daughter. The only other drug that I think we can fall back on is mestinon but since it is not specifically designated for orthostatic hypotension some doctors may not want to prescribe it.

There are NO safety benefits is bioidentical hormones - non of it is natural. There is alot of voodoo medicine are bio-identical hormones especially compounded products. Research studies have shown wildly variations in the amount of hormones in the compounded products. Despite what the designer pharmacist say what matters is how you feel - not blood tests or saliva tests. I do not get the idea of natural hormones: natural is accepting your body changes and doing nothing. Unless you pick it off tree, it is not natural. Sorry - but it one of those things I don't get. I see patients all the time getting in lots of trouble and being confused. "but it was natural" so is poison ivy.

Louise

Hey Cat,

I dont have time to read all the other replies so I hope I'm not just repeating things but I am going through all this hormone replacement stuff and that is extremely low! Progesterone is the one that seems to have the best effect on me for the nervous system stuff as it is known as the calming hormone and when it's very low it will cause havoc on the nervous system. Hope you get the treatment you need should you choose that route! Definitely go bio-identical! :-)

KC

I second the bio-identical. The regular estrogen/progestin's can cause all kinds of issues. The bio-identical for pre/post menapause is great. But, that won't help with birth control. Read books: What you doctor may not tell you about pre menapause and What your doctor may not tell you about menapause. Also, if you decide to do the bio hormones, Dr. Wrights book on Natural hormone replacement.

I wish I was surprise by this - but it is so common. Despite having the great Cleveland Clinic and University Hospitals 10 min from our house; we had to go to NY for help. That doc referred us to Grubb. When I finally convinced a local cardiologist to do a TTT (letter from MD in NY); she basically flat lined in 10 min. THe Docs response was - we thought that would happen!!! WHen I suggested starting some meds (florinef), she asked if we wanted to wait and see if Rachel improved on her own At that point , Rachel had been homebound for 2 years and using a wheelchair!!!!!!!!!!!!!!!!ARGHHHHHHHH

I think I will just pay for Rachel to fly back and see Grubb/Bev once a year if we have trouble finding a Boston MD to refill her rxs.

Louise

Hi

I noticed you location is Cambridge, Ma. My daughter is moving to Cambridge this week. Who was the POTs specialist ? who is your primary care doc? Thank you for any info. You could PM me

Louise

The funny this is that they had my TTT results, which show a clear indication of POTS. I just thought it was so bizarre the way the conversation ran "you are young and healthy and you'll be fine" when the Doc had called me in due to terrible TTT results. Argh.

I am feeling better about the situation now; I do have a wonderful PCP who has been in my corner from day 1 and has been learning about POTS along with me. Got to count my blessings!

Yes, it is the seasonique. The test was useless. What was he looking for anyway? No you do not need to stop your bcp. Measuring estradiol has limited usefulness in most situations. I can not tell how often primary care doc have screwed out gyn stuff. If you have any concerns, see a gyn, This doc ordered a test he did not understand.

Louise

Kava Kava is listed as one of the 12 most dangerous supplements in Consumer Reports Sept 10 issue. It is good article. One of the problems is the lack of regulation of herbal products in the US. It is hard to know what is in them. You may be exactly what you want, fillers or drugs not included on the label.

What kind of doctor is this???? You can not measure estrogen levels while the woman is taking BCPs. I am a nurse midwife - geez. Please tell me this is not an ob/gyn!!! Tell him you will consult with a gyn - who will laugh their head off!!

Louise

I talked to my doctor and he said it could be menopause (I am really young for that - but it's not unheard of) or it could be the Seasonique.

To do another blood test, I'd have to go off Seasonique and I don't want to - my POTS is somewhat behaving and I'm not shaking the boat as the low Estrogen isn't a 'huge deal' at this point.

Has anyone experienced really low Estrogen because of Seasonique? I was on Mirena and went right to Seasonique and don't really have a period anymore.

Hi

Rachel's mom here - since both you and Rachel will soon have the same health plan - it is a concern ( but if you need a chiropracter - no problem 8 visit/yr). If a cardiologist is in network, it may not be too bad. The last visit with Bev (Grubbs office) would been 75 (no tests). Now they charged much more - but since they are in network the charges get adjusted to a contracted amount. Now a trip the ER - can get very expensive fast $1000plus - I have to stare at the insurance policy more.

I willbe spending Thurs calling to verifiy more issues around this. I did try to contact the head physician for MD referral but no one has called back. It is a very confusing system in the USA, especially from someone from a country with Universal health care. I am hoping to shame them into having a cardiologist available over the next year - geez.

FYI both Persephone and my daughter are moving to Cambridge , MA for the same graduate school (different fields though). The insurance for grad students is not bery good with a 5000/yr precription cap that my daughter will fly through. Only 3 visits allowed to "not in house" specialities - NO CARDIOLOGIST!!!!!

Louise

was TheONLY specialty not covered on my health plan is cardiology.

If I end up in the ER, they see my pulse is off, and they want a cardiology review, it means I will have to pay it all myself.

How much could something like this cost? I have no clue.

In the UK, to pay for a private cardiology consultation would be $250-300. BUT I could have to see a cardiologist in an emergency situation, during an inpatient stay, etc etc.

Can anyone give me somee rough idea of costs. Are we talking colossal- as in, you would be bankrupted? Or are we talking may comparablewith UK cost of a private consultation?

MAN this health insurance stuff is confusing.

Starting to realise how lucky we are in the UK. I've had some pretty awful experiences, but at least I never had to worry about paying for them, or qualifying to have them covered!

As a clinician, there is one problem with this system, many health care systems have strict rules regarding the downloading data from outside sources. I had a pt come in one of these recently and I could not use it. Fortunately it was not important for her visit. My D has a bracelet that has the phone # of medicalert. One phone call and they have all the info. It also provides a card that haas all her infor on it - she offers it to be copy at new doc.

Louise

I agree- for diabetes see an endocrinologist!!! I have a pt (Iam a nurse-midwife) whose FP is happy that her sugars are in the 200s. He said that is her "normal" And she is having vision problemss!!!!!!

My D doesn't have celiacs but she does have a lot of food sensitivities (wheat, soy, dairy, egg and peanuts). A strict diet has helped her alot. I have wondered about her having MCAD because of all her allergy stuff/flushing etc. She is moving to Boston in Aug for grad school and I hope can see Castells.

louise

Hi

I vote for registering. I actually just talked my D about that after 5 years homebound (8-12th grade), she is finishing her Bachelors and going on for her PhD. She doesn't use her accommodations often - but sometimes she needs more time. Also, she can't know how she will respond to her new, intense schedule. Overall she is doing well with her bucket of drugs but she is not "normal" (Fortunately she agreed with me)

Louise

Hi

Rachel was originally dx with whey allergy by a GI doc. She had a colonoscopy, endoscopy, blood tests etc. That was in 2002 when they were ruling out Crohns( she got sick in fall 2001). Before Rachel started experiencing severe fatigue, weakness, increased hr, she was having stomach pain and diarrhea.

At that time the GI doc said the dairy allergy couldn't cause many sx. She was eventually dx with CFS and then POTS. On the John Hopkins CFS web site, I read that they thought that (for those with food alleriges), controlling the allergies was important. Rachel would not only have diarrhea after eating but increase fatigue, mouth sores. She avoided dairy for a few years but she didn't eliminate completely until Dec 2005. SHe was like "dairy alarm". It took us years to realize dairy was in McD's fries cooking oil, seasonings etc - places we didn't look. GEtting rid of the dairy helped her. She is also on lots of meds but if she had dairy ( she spurged for her HS grad and had a big set back for a week), all her sx would flare.

Last year, she started suspecting other foods because she would feel so sick (brain fog fatigue, tachy, and mouth soresafter some meals. She went to see an allergist/immunogist at large teaching hospital. I liked him. He discussed the difference between traditional food allergies (immediate IgE based - hives, anaphylaxis) and delayed reactions - (IgG based -fatigue, GI problems, brain fog). He did both skin tests and IgG blood test.

This whole area of testing has alot of controversy. My impression is that the tests are only guidelines. Your reaction to the food is the ultimate test. He started testing the foods that she felt were problems - beef, eggs, corn, peanuts,dairy. He added the foods she ate the most of - soy, whaet, gluten, oats and legumes. Boy were we surprised. No problem with beef which bothers her alot (probably the fat) but the worst tests were wheat and soy!!!!!!

She decided to give it a try - she is very strict about her diet. She feels much better. The combination of both meds, diet and life style management is critical to how she feels. It really is the total package that make the difference for her. Rachel was home bound for 5 years. She is not "normal" health wise but she is able to do alot now. The diet has only been part of the picture but an important one for her. She does not mind the limitations of the diet - it is not nearly as limiting as being stuck at home for 5 years.

Oh, she also started on probiotics too recently. Her doc said it might help - might not. It was worth while trying. There is a list of good ones some where - I'll try to find it. Some probiotics studied showed no active ingredients. We bought Jarrow Formulas Jarro-Dophilus EPS Vegetarian Capsules from amazon.

Sorry for the long post - but it has been one more piece of the puzzle for Rachel.

Good Luck

Louise

Hi

My daughter Rachel, has wheat (not gluten), dairy, soy, peanut, legumes, and milder egg & corn allergies. All but the dairy are newly dx as of July 07. It has made a huge difference for her. She has struggled with severe IBS sx as part of her illness. Some of the sites we like are

http://glutenfreegoddess.blogspot.com

http://www.godairyfree.org/

http://www.glutenfree.com/

Louise

HI

I haven't posted in ages. My daughter, Rachel, saw the head of immunology/allergies this past summer. In addition to an known whey allergy, she was dx with wheat (not gluten), soy, lugume, peanut, egg and a lesser corn allergy. Wow, did that floor us. She has been do great with the diet though. It is restrictive esp in terms of eating out. She is at college and has put together her own version of a heavily raw diet. Her diet was heavily wheat/soy because of the dairy allergy.

She feels much better. I was surprised by the stuff I learned about food allergies: immediate vs delayed. I suspect that people who feel better on a raw diet are avoiding alot of common allergies and that contributes to how good they feel.

She still needs all her meds but she is functioning the best she has since middle school. I do think food allergies are worth investigating. I was very skeptical about Rachel seeing a new Dr - so many times it is a disaster. He was very empathetic and understood we weren't trying to cure her POTS but find any contributing factors and control them. Rachel notice how meals could have a negative impact.

Louise

Susan

It does sound great BUT 1-2 years ago I also found that site and contacted OSU. The program and the people who ran it had been gone for years. I am surprised that they haven't taken the web site down yet - (unless they restarted it)

Louise

YES!!!!

Rachel was switched from one generic of midodrine (mylan/white pill) to another (pink pill) - it was awful. She had trouble even standing. It os scary that they can vary so much.

Louise

My insurance (United health care) doesn't pay for it either. I didn't pursue it because thru durgstore.com it is only 3/month than my brand copay (30)

Louise

Rachel qualified for SSI last week - we started the process in March. I did the on line adult disability form for her. After skimming thru 400 pages for SSI regulations, I concentrated on the issues with functional status and ability to maintain "gainful" employment. I got all her medical records myself and put them into folders with sticky notes describing their purpose. Example, one folder was early dr visits when no one knew what was going on - just to document length of illness: another was tilt table tests etc with those docs and meds, another all her IEPS from 8th grade on - again showing she was on homebound services for a disability. I focused on how her illness kept from being able perform their definition of "gainful employment".

I am amazed it worked - 1st time approvals are rare in Ohio. I am sure that we had over 4years of documentation that the public schools considered her disabled enough to be homebound help ( of course that was battle at that time too). She even got "presumptive approval" A small percentage of cases get fast preliminary approval with payments up to 6 months until the final approval is given. Rachel got her first payments into her bank account before she received written notice. We were checking something online and there was alot of money in the checking account!!!!

Focus moreon the functional limitations and inability to perform gainful employment than on the diagnosis. She did not need an exam and she only went in once in May for the formal application.

Louise

Bev is great. She is a nurse practitioner and has gotten to know the dysautonomia stuff well and consults as needed.

Louise

Melissa

Thanks - you said better than I did

Louise

My med comments were only that for many - meds are necessary. " Faith" and "balance" and "accepting" or whatever ( while an very important part of the picture) doesn't work. There is such diversity in the severilty with these illnesses and how people react to meds (good and bad). I

Louise

(((Melissa)))

Both Rachel and my thoughts and prays are with you.

Louise