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monkhester 04-05-2005 12:35 PM

Looking for a Miracle
I am hoping to find a doctor can treat me based on ALL of my problems instead of me having 3 doctors who are not taking in account how all my problems are playing in with each other. Each doctor is focused on treating his/her specialty and in the meantime I am getting worst. Here is a brief history.

I have spent all my life sleeping 3 to 4 hours a night even as a child, but was very active for the next 18/19 hours. In 1995, I started having very bad bouts of fatigue and finally got a PCP. At that time my blood pressure was so high (221/127-131) that we immediately concentrated on lowering my blood pressure. It took nearly 3 years to find a combination that would work (I might add that I was exercising a minimum of 5 hours a day and maintaining a very healthy diet): HCTZ 25 mg, Lisinopril 40 mg, Norvasc 5 mg. My blood pressure now is around 127/73-76. But I was hit with a strong bout of fatigue. I was diagnosed with anemia. I was treated with Iron supplements and nutrition changes. I begin to feel better for a little while (a couple of months) and the fatigue returned in full force. I begin to have bad bouts of sinusitis which was treated medically. Finally, I came down with pneumonia. I was then diagnosed with hypothyroidism. I was put on Levoxyl and over time begin to feel better. My immune system improved and I was no longer catching everything under the sun. Within a couple of months the unbearable fatigue returned and I was again diagnosed with anemia. I was treated with Iron supplements and nutrition changes again. Felt better for a little while and, again, the unbearable fatigue hit. I was diagnosed with PCOS and was treated with 2000 mg Metformin. By this time it is 2004, and the fatigue hit again. I was diagnosed again with anemia. I am on Ferrous Sulfate 325mg. This time it did not get better. I started having memory loss. Was sent for a sleep lab and was diagnosed with narcolepsy. I was put on an assortment of stimulants trying to improve the situation. I underwent drastic personality changes: so much so that I had to resign my job because coworkers begin to fear me. I was so tired that most days I couldnít make it to work. Concentration was nonexistent. I begin to do things that I didnít remember doing. Finally, on November 16, 2004, I was diagnosed with Atypical Bipolar 2. Instead of getting better, I have gotten worst. I sleep 16-18 hours a day; crowds tired me to the point of numbing fatigue; I am slow thinking, etc. I was told recently that my problem extended to more than Bipolar. I am seeing a therapist and will see a new psychiatrist on April 14th.

I have been trying to tell the docs (and no one is listening) that I have so many problems playing into each other. Each doctor is only focused on his specialty and they are creating a bigger mess. Here is a list of my problems and medications.

I'm A Mess!
Atypical Bipolar 2, Possible Mood Disorder & ADD (pending), Narcolepsy, Anemia, Hypothyroidism, Hypertension, Polycystic Ovarian Syndrome, Allergy, Obesity

Wellbutrin XL 300 mg, Topamax 150 mg, Seroquel 150 mg, Lamictal 25 mg, Concerta 54 mg, Xyrem 10.5 ml, Ferrous Sulfate 325 mg, Levoxyl 0.075 mg, HCTZ 25 mg, Lisinopril 40 mg, Norvasc 5 mg, Metformin 2000 mg, Flonase

I am pretty much a hermit now. I cannot even tolerate being around my family for a long period. I sleep about 18 hours a day and my narcolepsy seem to be getting worst.

Sleep paralysis and night terrors were never a big problem with my narcolepsy until recently. Now every night I am experiencing these episodes that are leaving me terrified. I am using seroquel for my bipolar 2 and it was doing a great job at putting me into a deep, restful sleep. About 2 weeks ago, I noticed that I am back into REM sleep which was my narcoleptic problem before treatment. I was pending more than 85% of my sleep in REM. I feel that I am back here again and that the seroquel is not working anymore.

The night terrors seem to be increasing. The bad thing about these episodes is that when I return to sleep (which I must because of the narcolepsy), I am drowning in fear. I don't know where to turn and I am sick of trying to find a solution at being functional. Is there any medical profession that can deal with ALL of my problems and see how they are playing on each other?

rouge 04-06-2005 05:26 AM

Re: Looking for a Miracle
Seems like your meds are controlling your medical problems. I would focus on your psychological problems and see a psychiatrist. They could tell you if all of your symptoms are related and help more with the psychological problems.

veggie girl 04-06-2005 11:16 AM

Re: Looking for a Miracle
Maybe try a holistic doctor - they look at the whole of the human body/mind, not just part of it. They may send you to specialists but they will monitor the results and ascertions of the specialists. Good luck.

zuzu8 04-08-2005 11:20 AM

Re: Looking for a Miracle
I'm sorry you are going through so much.

As veggie girl suggests, finding an [B]MD[/B] who specializes in a holistic approach to wellness is a good idea.

Here is a link to some holistic MDs by state. (from the American Board of Holistic Medicine)


You might also try calling one of the big hospitals in your area and ask them specifically if they have any holistic MDs on staff who are presently accepting new patients.

If you find someone, here are the kinds of questions to ask inititally:

What complementary therapies do you use in your practice? Are those therapies appropriate for treating my condition?
What is your background? Where did you earn your MD degree? Where did you do your internship/residency?
What training do you have in alternative medicine?
Why do you think itís important to blend complementary and conventional medicine in one practice?
What will be my role/your role in healing my condition?
How much say will I have in deciding the course of my treatment?
How will I know that a particular type of treatment is working?
How often will I need to come for an office visit?
[B]Do you accept medical insurance?[/B]

It's worth a try since you have so many different doctors treating you and probably no one is talking to each other!

SangReal 04-08-2005 01:12 PM

Re: Looking for a Miracle
[color=blue][font=garamond][size=3]Wow. This is a perfect example of what happens when mood disorders like bipolar disorder and metabolic problems like hypothyroidism are mixed and spiral out of control.

In my opinion, you should be on no more than 4 drugs:
1. a mood stabilizer for the manic phases of bipolar disorder (preferably Depakote, Tegretol, or Lithium - though Lamictal will do)
2. an antidepressant for the depressive phases
3. levothyroxine (Synthroid or Levoxyl) in a higher dose than you are now taking
4. progestin-only birth control and possibly Metformin (for PCOS)

Here's why.
[list][*] Your depression, obesity, fatigue, infections, problems concentrating, your anemia, and even possibly your allergies and hypertension can be linked to hypothyroidism, particularly if it is long-term undertreated. You may need to continue your iron until the new dose of Levoxyl kicks in, but I seriously doubt you'll need it forever. Anemia is usually a symptom and rarely a cause. Also, I gather from your Topamax prescription that you have migraines. Proper thyroid treatment may alleviate these also.
[*] I believe that you do have bipolar disorder (though I question the diagnosis of bipolar II). Therefore, you should be on some form of preventative mood stabilizing drug for it, and perhaps also an antidepressant to control your depression, although I honestly think that much of it will be alleviated when your thyroid problem is under control. However, your anxiety can be attributed to your bipolar disorder, and your night terrors and some other symptoms to your medication. You narcolepsy might be related to one or both. In general, I do not support the use of Seroquel for hypomania. A bipolar II diagnosis precludes full mania, and Seroquel is only indicated for severe, acute mania.
[*] Estrogen-containing birth control can interfere with thyroid drugs, so progestin-only is the way to go. The reason you need to take birth control is twofold: it will help with the PCOS, and it will also prevent pregnancy while you're taking birth-defect-causing mood stabilizers.[/list]Oh yes, and I agree that you should be treated by only one doctor, a general practitioner who has a clue, possibly holistic. A psychiatrist is only going to prescibe you meds you don't necessarily need (like Wellbutrin for instance). For instance, instead of checking your thyroid, a psychiatrist is likely to just prescribe an antidepressant. It also disturbs me that you're on no less than three medications to help your high blood pressure. Drugged up is no way to live.

Your hypothyroidism is not being treated properly. Find a doctor who will treat it correctly by doing regular TSH, FT3, and FT4 tests, as well as regular hemoglobin assays for control of anemia. I bet your doctor's only testing TSH levels, but that might not be an accurate picture of what's going on in your body. Hang out on the thyroid disorders forum for a while and you'll see what I mean. In the meantime, I hope you feel better![/color][/font][/size]

hanelo4 04-10-2005 12:28 AM

Re: Looking for a Miracle

I'm sorry you are going through all of this right now. I just wanted to let you know and agree with posters here that Hypothyroidism can definitely make you feel terrible. It can cause you to sleep 18/19 hours a day, expecially if your thyroid is off a whole lot. It can also make you forget things and feel like you cannot think clearly. I also agree that although I am not a doctor, you seem to be on quit a lot of medications. They can definitely be causing your night terrors. I really hope you find a good doctor soon. I know how it feels to be down and sleep for so long. I too have hypothyroidism.


paegghead 11-04-2005 05:18 PM

Re: Looking for a Miracle
Hi. I just wanted to mention it has been my experience, the more meds taken, the more symptoms and side effects. I personally had a terrible time with Welbutrin. It can cause psychiatric symptoms, like paranoia and bi-polar symptoms, it did to me, once off the drug those symptoms went away. You may very well be bi-polar, but you never know, it could be too many meds. I cleared the decks so to speak and felt better. Sometimes meds FOR fatigue can cause worse fatigue, too much iron, too much thyroid meds. Everyone is different and responds different to meds no matter what a doctor has been taught. Don't be afraid to start stoping meds. I wish you well and hope I could help.

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