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Topic: Hitting another one of those points! (Read 544 times) |
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CrazyDog
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Hitting another one of those points!
« on: Feb 26th, 2006, 3:26am » |
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I am hitting another one of those points again with doctors, medications, complications ... where I am just fed up and sick of it to the point where I am not sure what to do.
If I take any TRIPTAN too early it does no good, i.e., I must be in a full on hit.
During a full hit I must take both a TRIPTAN plus a NARCOTIC.
Oxygen with clustermasx for 15 minutes works 60 to 80 percent of the time.
Narcotics are the only thing that will work for twinges, shadows, background headaches, i.e., those things that come before a full on hit, that may come and go all day long but generally intensify later in the day and increase in frequency; thus, signaling that a full on hit may be approaching. I have also noticed that by keeping these signals at bay it seems to help reduce the severity/frequency of full on hits.
IMITIREX injection is the only thing so far that seems to prevent twinges, shadows, and background headaches that come before a full on hit and also prevents a full on hit while lasting for up to 12 hours.
I don’t think the TOPAMAX has done anything to help me and now I am getting back, and side pains. This is getting get worse and it seems to be going into my groaned but can’t tell if it’s the constipation.
As a preventive I think the VERAPAMIL has done the best but the constipation is starting to be more than worth the results.
Now an endocrinologist wants me to start taking testosterone at age 37. I am refusing because I am afraid of what all these doctors are doing and this would just be one more thing. I did at least go have the bone density check to see if I had osteoporoses.
Thanks for listening.
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WaltD
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burnt-toast
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Re: Hitting another one of those points!
« Reply #1 on: Feb 26th, 2006, 7:18am » |
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on Feb 26th, 2006, 3:26am, CrazyDog wrote:I am hitting another one of those points again with doctors, medications, complications ... where I am just fed up and sick of it to the point where I am not sure what to do.
If I take any TRIPTAN too early it does no good, i.e., I must be in a full on hit.
During a full hit I must take both a TRIPTAN plus a NARCOTIC.
Oxygen with clustermasx for 15 minutes works 60 to 80 percent of the time.
Narcotics are the only thing that will work for twinges, shadows, background headaches, i.e., those things that come before a full on hit, that may come and go all day long but generally intensify later in the day and increase in frequency; thus, signaling that a full on hit may be approaching. I have also noticed that by keeping these signals at bay it seems to help reduce the severity/frequency of full on hits.
IMITIREX injection is the only thing so far that seems to prevent twinges, shadows, and background headaches that come before a full on hit and also prevents a full on hit while lasting for up to 12 hours.
I don’t think the TOPAMAX has done anything to help me and now I am getting back, and side pains. This is getting get worse and it seems to be going into my groaned but can’t tell if it’s the constipation.
As a preventive I think the VERAPAMIL has done the best but the constipation is starting to be more than worth the results.
Now an endocrinologist wants me to start taking testosterone at age 37. I am refusing because I am afraid of what all these doctors are doing and this would just be one more thing. I did at least go have the bone density check to see if I had osteoporoses.
Thanks for listening. |
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Ever discuss this mix of Triptans, Narcotics, Calcium Channel blokers, anticonvulsants, Hormones, etc. with another doctor? I'm not one, but I would be uncomfortable with the range of meds. you've been prescribed and concerned about side effect and interactions.
I'm at 720mg of Verapamil daily - good diet and fluid intake resolved the constipation issue. Fruits, vegetables and lots of water. If Verapamil is helping you you may be able to continue with just a small diatary change.
Have you discussed everything you are taking with your Pharmacist? You may be able to obtain some valueable information to discuss with your current doc. if you are reluctant to see someone else.
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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chewy
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Re: Hitting another one of those points!
« Reply #2 on: Feb 26th, 2006, 12:27pm » |
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Sounds like a typical cluster med regimen to me except for the narcs.
What symptoms brought you to an endocrinologist in the first place? There is such a thing as overkill with doctors.
Quote:| I am afraid of what all these doctors are doing |
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How many are you seeing?
Ch can only be managed and there are some effects of that management that you just have to deal with.
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| « Last Edit: Feb 26th, 2006, 12:28pm by chewy » |
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CrazyDog
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Re: Hitting another one of those points!
« Reply #3 on: Feb 26th, 2006, 12:48pm » |
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I have suggested several times to my Neurologist that the TOPAMAX has done nothing for me. Her first response was that she did not want to make change because we had too much stuff going on, second response was that many of her patients think that it is not working, and on a third visit she wanted to increase it.
As for the VERAPAMIL I have been taking the sustained release form which seems to be incorrect for CH and is also being managed by my neurologist.
Another thing that worries me about my Neurologist is that she tends to relate everything to migraines.
For example she wanted me to take ZOMIG NS immediately on first sign of a headache, i.e., those things that come on early in the day before a full on hit that may signal a full on hit but do not guarantee you get hit.
For me that would require as much as 22 doses per month and then she even went so far as to suggest that I could pick up that tab for what insurance will not cover.
At $28 per dose and two little girls that need college I don’t think so, maybe if my Neurologist would forgo the $500 session fee.
Maybe now with my back, side, and groaned pains; if my primary doctor finds it’s the TOPAMAX, then maybe she will take me off it.
So I am definitely thinking about a new Neurologist!
The testosterone treatment is to prevent osteoporoses but what is bugging me about this is that the Endocrinologist is saying that the low testosterone is due to Narcotics use.
I am only taking 300mg of HYDROCODN per month. And the only reason we found out about the low testosterone level is because I aksed to be tested.
Way before I even started taking narcotics I was having hot flashes. I am too young to be having hormone problems but when I learned about CH and that science had recently started focusing more on the hypothalamus I new there was a connection between the hot flashes and testosterone level.
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WaltD
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Redd
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Re: Hitting another one of those points!
« Reply #4 on: Feb 26th, 2006, 12:54pm » |
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The back and side and other pains you refer to "may" (I'm not a Doc but I play one on TV...  ) might be kidney stones developing, which is aq known side effect of the Dopymax. I'm suprised you haven't mentioned the loss of IQ points from the stuff in addition to the pains.
Have that pain checked out.
As for the Narcs, those may very well be causing the shadows and twinges and rebounds you are experiencing.
Keep us posted.
Pegg
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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chewy
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Re: Hitting another one of those points!
« Reply #5 on: Feb 26th, 2006, 2:17pm » |
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Quote:| many of her patients think that it is not working, and on a third visit she wanted to increase it. |
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Brilliant. Dump her and get a new neuro.
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BarbaraD
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Re: Hitting another one of those points!
« Reply #6 on: Feb 26th, 2006, 3:26pm » |
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What dosage are you taking of the topamax? I've been on a maintenance dose of 100mg for a while, but when I'm in a "high cycle" (I'm chronic) I've been up to 400mg. It's been my miracle drug, but doesn't work for everyone.
Narcotics cause rebounds and I'd be very cautious about them. The Verap works well for so many (didn't work for me - my pressure was too low to start and it dropped really low on verap).
Harmones and CH - don't really think there's a relation, but that's still up for debate.
Diet can help with the constipation - water, water, and more water. Eat a few prunes a day - that works fine with the topamax.
And while you're at it FIND A NEW NEURO. IF she doesn't know the difference between CH and migraines -- well.... find a new neuro. Rule one about neuros - they are not GODS - they are just practicing...
Read everything on the left you can about CH and go in prepared with FACTS about CH. You have to become the EXPERT - the docs aren't going to take the time.
GOod luck...
Hugs BD
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What don't kill ya, Makes ya stonger!
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CrazyDog
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Re: Hitting another one of those points!
« Reply #7 on: Feb 26th, 2006, 7:07pm » |
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This last week I finally made the connection of back pain to the TOPAMAX. I do have some lower back problems but this time the pain was strong enough, up higher and slightly off to the side from what I normally expect from the lower back pain. Then the milky colored urine really gave it away. I am seeing my primary care physician on Wednesday so hopeful I can resolve this quickly.
One thing I have not done with the VERAPAMIL is change my diet. I should do this anyway, i.e., eat more fruits and salads … I make sure to get plenty of water and did cut out the pops, coffee, etc.
As for the narcotics my Neuro did give me several articles to read on rebound headaches, one from the NHF.
After reading the information provided I can see why the Neurologists don’t like headache suffers to use analgesics of any kind!
However, while my symptoms don’t seem to match what the NHF article indicted for rebound headaches, I suppose the only true way to find out is to go without the analgesics, record the results, and then compare the differences.
As for the relationship with CH and hormones well I don’t know what it is exactly but what I do know is this.
Recent imagining with PET scans has found that an area of the hypothalamus is active on the side of the headache. CH messes up the Circadian and Circannual cycle. This cycle is regulated by the hypothalamus. CH victims are found to have low levels of melatonin which is a hormone. The hypothalamus instructs the pituitary gland which in turn regulates other hormones. And I have a testosterone level of a 70 year man and the normal function that boost this back up is not working. Other than damaged testicles the only other place to look is the hypothalamus/pituitary which then leads back to CH.
Anyway the only reason my Endocrinologists wants to give me testosterone is to prevent premature osteoporoses in old age. Having low testosterone will cause this process to accelerate and she wants to prevent that.
On the other hand since I seem to need the Analgesics and I don’t believe I am getting rebound headaches maybe there is something else going on. I have had numbness and tingling in my right hand. And in the last year there has been some in my left. The CT and MRI was clean maybe I should ask for an MRA.
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| « Last Edit: Feb 26th, 2006, 10:14pm by CrazyDog » |
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WaltD
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BarbaraD
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Re: Hitting another one of those points!
« Reply #8 on: Feb 26th, 2006, 7:57pm » |
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I KNOW Excedrin will cause rebounds. It will get rid of the pain if you take it soon enough, but the rebounds are not worth it.
As for the caffeine - I hit the coffee at first sign of a headache. That and the O2. This will most of the time abort the HA if I get to it before it hits about a Kip 5. After that it's cafergot and phenergan.
At night I take about 12mg of melatonin to get thru the REM sleep and to get some rest to thwart the daytime HAs without the total exhaustion. It seems to be working and I lead a fairly normal life even being chronic.
I'm on topamax and have been since 99. I don't experience all the side effects that others have had, but I take the dose at night and sleep off the side effects (at least that's my theory).
Benadryl is the choice of OTC meds for some.
sounds like you've got a kidney infection along with the CH (not necessarily caused from the meds). My suggestion on that would be to get some Goldenseal Root and a gallon of distilled water. Take a couple of Goldenseal Root caps every 2 hours with a couple of glasses of distilled water till the gallon of water is gone. That's what Dr. Jeff at the health food store had me to - It did the trick for me. No more back pain - cleared that sucker up in about 24 hours.
When I get in really bad shape I take DHE-45 IV for a few days till the high cycle breaks and start over. I hate that stuff with a passion, but sometimes it's all that will help and I'm not one to suffer needlessly.
Good luck,
BD
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Redd
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Re: Hitting another one of those points!
« Reply #9 on: Feb 27th, 2006, 8:38am » |
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Quote:| I have had numbness and tingling in my right hand. |
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This is another of the known side effects of Topomax.
Diet and verapamil: DO NOT eat or drink grapefruit.
It can cause the body to absorb too much of the med too fast because it breaks down the normal stomach and intestinal mucus that helps to regulate this absorption.
Pegg
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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CrazyDog
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Re: Hitting another one of those points!
« Reply #10 on: Feb 28th, 2006, 1:13am » |
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on Feb 26th, 2006, 7:07pm, CrazyDog wrote:| I have had numbness and tingling in my right hand. And in the last year there has been some in my left. |
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on Feb 27th, 2006, 8:38am, Redd715 wrote:| This is another of the known side effects of Topomax. |
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What if I was having this before I started the TOPAMAX and it seemed to get better with the TOPAMAX? It makes me wonder if there could be more going on than CH but then on the other hand it could just be another autonomic symptom!
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WaltD
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