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Topic: Will this make it worse or better??? (Read 602 times) |
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Samiam
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Will this make it worse or better???
« on: Mar 14th, 2007, 10:22am » |
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I have given up caffeine about a year ago do to going hyper on thyroid meds. Not fun it produced the worse panic attacks I ever had ( when my thyroid meds are screwed up I get panic attacks)
So everyday I drink a 24 oz of decaf from Dunkin Donuts. Well today I woke up with a kip 2 and it's been on and off since I have gotten up slowly building. I have already been on the O2 about 2 hrs ago and it knocked it right down buy it's coming back again I'm getting depressed that I seem to be attached to this thing. Don't get me wrong I'm thankful that it works it's just depression setting in. The only think I did different was add in the melation in last night have done this now for 2 night I think I will stop and just stay with the klonopin. So this morning I have a small cup of coffee with caffeine and was wondering if you think this will help.
Do I drink this or not? I have yet to find an preventive that will work after 20 some years.
Sami
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thebbz
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Re: Will this make it worse or better???
« Reply #1 on: Mar 14th, 2007, 10:58am » |
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Go for it! What do you have to lose?
Hope it works. Put in some creamer and enjoy.
all the best
jb
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Brew
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Re: Will this make it worse or better???
« Reply #2 on: Mar 14th, 2007, 11:35am » |
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Sami - Please share with us what kind of preventative meds you're taking. If you're like most, you shouldn't have to be aborting multiple times per day, and it shouldn't be throwing you into this much of a tailspin.
Something's missing here.
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Samiam
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Re: Will this make it worse or better???
« Reply #3 on: Mar 14th, 2007, 12:57pm » |
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I give up....I just typed for almost an hour and explained everything and now it's gone. Having a melt down will post later.
Sami
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thebbz
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Re: Will this make it worse or better???
« Reply #4 on: Mar 14th, 2007, 2:39pm » |
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Quote:| I have yet to find an preventive that will work after 20 some years. |
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Your not alone there.
So did it work?
Whats the thyroid stuff about? My wife takes synthroid to keep her from ripping my head off.
Not really. She has to take it every day. Do not melt down. This makes it difficult to see over the counter.
hope your doing better.
Personally I had to abandon the melatonin. It just made things worse for me. But thats just me.
all the best
jb
Try the post again later
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LeLimey
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Re: Will this make it worse or better???
« Reply #5 on: Mar 14th, 2007, 2:45pm » |
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Hang in there Sami, I'm thinking of you and will be looking out for you coming back.
Helenxxx
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Samiam
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Re: Will this make it worse or better???
« Reply #6 on: Mar 14th, 2007, 3:42pm » |
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I'll try to keep this short. Started clusters at age 17 for 10 yrs I was told they were either tension h/a or sinus. I had MRI's MRA's sinus x-rays and so on. In 1987 I went to see Dr. Silberstein while working at the hospital. My Doctor who I worked for sent me there right away when he saw me. fast forward. I was put in the hospital within 3 hrs. I stayed there for 8 days with DHE IV infusions. came out armed with DHE 45 injections but the cycle did not break. I continued to take the DHE 45 until the clusters stopped. We tried many of the then available preventives which none proved to be successful. My cycles at that time lasted 4 months May-Aug.
The following year when they started again we once again tried all kinds of stuff yet nothing worked except the DHE 45 injections. This is the same time that he was transferring all patients from this to Imetrix Well I was sent home still using the DHE but in order to use the Imetrix you had to have an EKG so I was scheduled and was told to continue to use the DHE. I received a call a couple of days later telling me to discontinue using the DHE until I saw a Cardio due to an abnormal EKG. I asked what I could use and they told me nothing until I was cleared. I was beside myself. He left me with not even pain meds to deal with this. When I told them that I would use the DHE if I got a cluster they told me to do it at my own risk. Cardio cleared me. I was put on Imitrex injections. Cycle broke before I could use them. The following year I got pregnant and when I went I started to cycle at 8 months this doctor dropped me cold telling the OB I was told not to have kids. OB put me on fiorcet to get me through until she could do a C-section. this was 1990.
I found a great neuro in 1992 and she took me though a cycle again with trying preventives yet could not find anything so we used Imitrex. I'm forgetting a lot I know but it's so hard to remember everything. She also worked with my OB this time when I had my second son. I started to cycle at 4 month and in order to carry to term they wanted an MRA. I had it it was OK so they labeled me high risk and took me though. I did this with only one dose of stadol in a month other then that Nothing just pacing and crying. The cycle broke in a month and everything was fine.95-96
1998 I found my other neuro when I went into a cycle and my neuro had a 3 month waiting period and I would have been out of cycle by then so I found Dr. Farber. who was a cluster head himself yet pushed the envelope. This is when we did the nerve blocks and tried other preventives. Nothing worked so back to imitrex.
2002 again cycled and we did everything. Nerve blocks, botox, Predisone taper which didn't work didn't stop the cluster even at 80 mgs. We again just went back to Imitrex. 6 weeks the cycle broke.
In 2003 we started on thyroid meds T4 meds. I remained on this until I had a problem and we switched over to a T3/T4 combo (Armour) chemistry is really screwed up can't stay stable. Last Jan we added in Cortef 7-11-3-7 to follow the rhythm due to adrenal fatigue. We have weaned this down to just 5 mgs at 7am. So I'm not sure if this has something to do with it.
2007 I was really sick and they first thought that I had a UTI was put on antibiotic but had a reaction to them so I was put on Leviquin. Called after 5 days to tell me that I didn't have the UTI to stop meds. One month later I got really sick again. HMO doctor put me on the dose pack antibiotic and on the last day I started to get the jabs. It turned out that I had Mono and didn't need to be on that antibiotic either but it was too late the cluster had started.
Called to make an appointment only to be told that they no longer had my chart it was destroyed and that I would have to start all over again. I began to cry and to top it off Dr. Farber was leaving and would not be seeing any new patients this was my chart that I brought to him which had over 20 yrs of medical info. I had my friend who is a doctor call and they found the chart but still maintain that I'm a new patient so since he is leaving with no one to cover him he wouldn't be able to see me.
Found new neuro. Wednesday had nerve block hurt like hell. Not sure if it helped. Was put on Imitrex but insurance is giving me a hard time and this is the first neuro that put me on O2. I will see this neuro again next Thursday to see what else we can do but by this time I'm should be slowing down and it maybe too late to start anything. I did try Melantion the last two night 6 mgs along with my .05 mgs of Klonopin but got a h/a within 1 hr of taking it. I took the nasal and was able to sleep. Woke up today with a kip 3 Ice pack and went back to sleep until 7am when I woke up again with a kip 3 this time is was beginning to climb so I started the O2 and have been fine so far today. I also added in a cup of caffeine this is new since I have given this up for over a year I only drink decaf. This is the first day I have gone this long without o2.
If you can come up with anything or see anything that I may have done to do this please let me know. I'm sure there are many things that I have forgotten.
Sami
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thebbz
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Re: Will this make it worse or better???
« Reply #7 on: Mar 14th, 2007, 3:51pm » |
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One thing you forgot Sami...breathe. You are doing well by what you describe. Remember that you run the show.NOt the demon. I know its tough but you are still moving forward with your treatment and learning. Good job and stick with it. Caffiene can be bad too,,,try to restrict your intake and mix it up with other abortives. Keeps the rebounds away.
all the best
jb
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Samiam
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Re: Will this make it worse or better???
« Reply #8 on: Mar 14th, 2007, 3:52pm » |
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Also I don't think anyone will chance another perdisone taper due to the adrenal issues. Thyroid meds are being taken due to the many many symptoms that I had and a very low T4 T3 level. It's just a work in process. I almost think the melation is making things worse. I think I will go back to 1 mg of Klonopin that I was put on the last time I cycled. I didn't like it but that's all I have to go on. New neuro has 2 nasal sprays for me that's all he could find Drug reps are not giving them out. Insurance will give me 12 more and I hope that the girls in the office follow through for the appeal and the over ride with both the meds and the botox which by the way I do think helped.
Today was just a melt down day. I'm so tired yet I don't dare sleep because that is when I really get hit.
Sami
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Brew
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Re: Will this make it worse or better???
« Reply #9 on: Mar 14th, 2007, 4:24pm » |
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Sami - I don't see anything in any of this where you mention:
- Verapamil
- Lithium
- Methysergide
The first two are the most common preventatives. The last has a few more precautions that go with it.
In the brief history you've provided outlining your treatment, I only see attempts to abort attacks after they've started. Nothing that looks like preventatives (other than prednisone, which you've stated you can't take because of the thyroid issues, and which should only be used transitionally until one of the preventatives starts working anyhow).
Any experience with any other preventatives at all? If you need more background, go here:
http://www.clusterheadaches.com/about.html#Prophylaxis
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cynjeep89
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Re: Will this make it worse or better???
« Reply #10 on: Mar 14th, 2007, 4:57pm » |
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Sami,
Having been thru hyperthyroidism for many years myself I know what havoc it can cause both mentally and physically. Believe me....been there done that and I have many horror stories I'm sure we both share....the times when I couldn't gain weight no matter how much I ate, people accusing me of being anorexic even though I was eating everything in sight, mental confusion, shakiness, depression, palpitations, heat intolerance...oh the list goes on and on.....
Anyway, I am wondering if you are checking with your endocrinologist regarding the meds you are taking for CHs?
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Samiam
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Re: Will this make it worse or better???
« Reply #11 on: Mar 14th, 2007, 5:11pm » |
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Hi Brewcrew,
Yes in the early stages before I even turned 20 I was put on:
Lithium (Back then the doctor was afraid that I would have a problem with being on this and the way people would react. I told him who cares what people think if it gets me out of pain. 2 months on it didn't help doses were upped still no change.
This was tried twice:
Verapamil: Was on this also 800 mgs stayed on this the whole cycle and it didn't do anything different for me cycle still went 6 weeks and didn't change the amount of clusters I had a day.
Ones that I can remember are. Inderal and Indocin feverfew. One I can't remember which my liver enzymes when really high and was pulled off of it I think that was Sansert I do know I was on Sansert just don't know if that is the one that caused my liver a problem. Tegretol. bio feedback training.
On a EKG last year it showed that I had a MI but the CPK and tropoins were all neg. I also had a nucler study was also neg. My T waves flip for what ever reason they don't know why.
Amerge used at bedtime but I don't know the dose until I see my file.
Sami
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Samiam
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Re: Will this make it worse or better???
« Reply #12 on: Mar 14th, 2007, 5:17pm » |
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Hi Cindi,
Yes he knows what is being done. I have gained almost 30 lbs going on steriods and it has upset me greatly. I haven't been able to really eat in almost a month and I have only lost 4lbs. I drink almost a gallon of water a day and never drink soda or any sugary drinks. I was also on a ellipical trainer everyday 5 days a week and lost nothing. I had to stop when I was sick in Jan but then started to walk a couple times a week but since this I had to stop also. The worse is the brain fog and feeling stubid. Being tired runs a close second but now with Mono I just don't know what end is up. Along with the joint pain. I really thought we were on the right track and I was doing well until all of this started. We were even weaning down off the steriods that I have been on for over a year.
Sami
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Brew
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Re: Will this make it worse or better???
« Reply #13 on: Mar 14th, 2007, 5:19pm » |
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on Mar 14th, 2007, 5:11pm, Samiam wrote:| On a EKG last year it showed that I had a MI but the CPK and tropoins were all neg. I also had a nucler study was also neg. My T waves flip for what ever reason they don't know why. |
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Here you went over my head. My best advice is to work this out with your neuro, and if you get no positive results, find a neuro with a specialty in head pain. I'm at a loss. And I'm also not qualified to give out medical advice - I can only tell you what has worked for me (which is, to varying degrees, verapamil, lithium, sansert, amerge, and good ol' oxygen).
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Samiam
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Re: Will this make it worse or better???
« Reply #14 on: Mar 14th, 2007, 5:34pm » |
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Brewcrew,
What that ment was they first thought that I had a heart attack by the EKG but with blood work it shown that it wasn't a heart attack and they followed that up with a more intensive test that comfirmed it.
The new neuro that I'm seeing is Dr. Cohen and he is in a Headache center so I'm hoping it will work out. We are still waiting on my extensive file so far he only got a couple of pages.
You did help me out telling me that Melation didn't work for you because I thought it was working for everyone.
Sami
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LeLimey
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Re: Will this make it worse or better???
« Reply #15 on: Mar 14th, 2007, 5:59pm » |
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Sami the sad truth is NOTHING works for everyone, this is like the ultimate designer headache - we all have one of a kind and that sucks as it makes finding treatments so hard - as I do NOT need to tell you!
Hang in there,
Helen
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Guiseppi
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for me. IRe: Will this make it worse or better???
« Reply #16 on: Mar 14th, 2007, 6:06pm » |
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You've been given some great advice so mine will be short. Lithium at 1200mg a day works as a great prevent for me, but takes up to 2 weeks to start working, I use a pred taper while I'm waiting for my lithium levels to get up.
Oxygen alone, for me, only keeps the CH away for about 20 minutes then it's back with a vengeance. I take a cafergot, (It's kind of an old school ch med) as soon as I start the oxygen. The 02 puts the brakes on the CH and the cafergot buys me up to 12 hours. Might be worth asking about. Good luck and welcome to the board!
Guiseppi
ps...the Bzzz is right, you've got a great attitude and that goes a long way in this fight!
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