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Just want my life back! (Read 991 times)
Kime
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Just want my life back!
Feb 3rd, 2013 at 11:40am
 
Hello all! Very new to this site... Found it about 3 days ago while I was up fighting sleep and yet another headache! I am 37 years old from braidwood, IL. It was about a week ago that I seem my first Neurologist. I have been dealing with these horrible life altering most excruciating headaches for about 17 years! I started out years ago seeing my regular doctor who prescribed me preventive meds for migraines as well as put me on maxalt10 and the immitrex... I was in college with my infant daughter, single mom at that! Well at that I ended up having to withdraw from college because these headaches were so over bearing and the medicine was not helping. I would take visits to the ER and over time I was treated as if I was some pill junkie looking for my next fix! When actually I just wanted some kind of relief! When I would get them around my daughter I would make sure her bedroom was very childproof safe and I would baby gate her room and lay on her floor with my pillow and blanket in tears and do my best to interact with her during these episodes. Sometimes I would dose off to awake with her rubbing my head trying her best to make mommy feel better! Once I realized these were not headaches I proceeded to see dentists and eye doctors. Still nothing.. Everyone insisted it was migraines, UNTIL I tried the dentist one more time. I begged the dentist to remove my wisdom teeth back in 2006. She insisted I did not have any but when she exrayed my teeth all she could see was my sinus was huge and that I had clenched my teeth so much during these headaches that I had knocked ALL of my teeth loose! She recommended that I go see an ENT. So sure enough I did. He seen a sinus infection. Cleared the infection, did some allergy testing and discovered that I was allergic to everything I breathe and the unavoidable food groups. So he put me on allergy shots 3 times a week for about a year to start to build up my tolerance to my allergens. I went 5 years with not a single headache. It was wonderful. Thought I finally found the relief I was looking for and I could have my life back! Nope not so lucky... In 2011 they hit me again. Yet another what seemed to be sinus infection. So the ENT again put me through allergy testing telling me that allergies change so we needed to see what the change was so he could give me the proper injections for my allergies! I begged him to research why I get these headaches. I can't be the only person in the worlds there has to be something or some kind of surgery that could fix whatever this was! Well he insisted that the only fix was allergy shots and I must have developed allergies during my pregnancy with my daughter as that was when these headaches hit me hard! So once again I went on antibiotics and prednisone packs and allergy shot. But this time there was no relief whatsoever. So I went and got a second opinion from another ENT begging him that there has to be something wrong with my sinus!!! After he did his exam he explain that there was no sign of infection and nothing he could see with the sinus that would be causing these headaches that I am describing to him. Again I was accused of sealing pain killers. I got very upset and frustrated because at this point I had been seeking some kind if relief since 2011! I explained to him that I was not trying to mask the pain with more medicine I was looking for answers and a possible solution. This was just a few weeks ago and his recommendation was for me to see a neurologist. The thought would have never crossed my mind. I was so convinced it was my sinus. The sinus and allergies are only part of the problem and during this season is also a trigger. So I went and seen the neuro last week and after telling him my story he was so amazed he went to get the other doctors in the practice. He was so amazed with the journey I have been in to find a solution and the fact that I have dealt with these for 17 years. I had a small sigh of relief to just hear that there was a name for what I was going through. He has started m on a daily medicine called indomethacine. Very little relief. It is to the point that even though ibuprofen and excedrin don't help, I have eaten so much my stomach hurts! I am scheduled to go back and see him at the end of February to see if this medicine helps. I am hopeful but at the same time would like some relief in the meantime. There has to be something that can help me get my life back!!!????
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Guiseppi
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Re: Just want my life back!
Reply #1 - Feb 3rd, 2013 at 1:11pm
 
To start with, we need to get you to a doc who is a little more up to date on CH. The meds he has prescibed so far do not speak of a current knowledge of CH. Here's some docs in the Illinois area other sufferers have used, any near you?

Illinois

Aurora:
Dr. Karen Burgner (PCP)
Dreyer Medical Clinic

Chicago:
Diamond Headache Clinic
Dr. Robert Wright
University Neurologists
Dr. Kenneth L. Moore

Glenview:
Dr. Thomas Freedom
NorthShore - Glenbrook Hospital

Highland Park:
Dr. Trupti Gokani
North Suburban Wellness

Northbrook:
Dr. Lawrence Robbins
Robbins Headache Clinic

I’ve had CH for 36years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

This link will show you how to get set up with welding oxygen:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Follow this link  to the medications section of this board and read the post  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH! I have gone pain free for 3 years on it, PLEASE give it a look see and a try.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Bob Johnson
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Re: Just want my life back!
Reply #2 - Feb 3rd, 2013 at 1:56pm
 
You will find folks here generous and anxious to help you--and there is a great deal of useful information to be had.

BUT you can help us by writing so that we can understand you.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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« Last Edit: Feb 3rd, 2013 at 3:40pm by Bob Johnson »  

Bob Johnson
 
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wimsey1
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Re: Just want my life back!
Reply #3 - Feb 5th, 2013 at 7:38am
 
Kime, to get your life back you need to discover what is causing the pain. When you know the cause and have received a diagnosis in which you have confidence, then the proper interventions can be addressed. Print out what Joe gave you and bring it with you to the docs. Indomethacin was a shot in the dark, and worth trying, but it treats a very specific and narrow range of headaches. That it didn't work means it will not work at all. If you have CHs, these can be managed in much the way Joe describes. Chin up, Kime, and become your own best advocate: informed and resolute! Don't hesitate to write and ask any questions you may have. God bless. lance
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Kime
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Re: Just want my life back!
Reply #4 - Feb 5th, 2013 at 1:55pm
 
I thank you all for the responses. I am pretty confident that this doctor has diagnosed me correctly. After doing all the reading and research once he gave me the diagnoses I am pretty confident that this is it...FINALLY. I do have two of the GIANT green oxygen tanks, am I understanding correctly that this is the same oxygen you all are recommending? All I would need is a special mask to attach to the tank?
All of the doctors you have listed are at least an hour from me but thanks I will continue to search for the right one that is familiar with these headaches.
And Bob what is the link you have attached? I researched these headaches after the initial diagnosis and that is the link I was taken to. Is there something I am missing with that link?
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Brew
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Re: Just want my life back!
Reply #5 - Feb 5th, 2013 at 2:36pm
 
Look at your first post. It's one gigantic paragraph. Impossible to read.

If you want people to read and respond, don't make it so hard to read. Most people will get through one or two lines, then move on.

How about this? This is MUCH easier to read, and I haven't added, subtracted, or changed one word:
Quote:
Hello all! Very new to this site... Found it about 3 days ago while I was up fighting sleep and yet another headache!

I am 37 years old from braidwood, IL. It was about a week ago that I seem my first Neurologist. I have been dealing with these horrible life altering most excruciating headaches for about 17 years! I started out years ago seeing my regular doctor who prescribed me preventive meds for migraines as well as put me on maxalt10 and the immitrex... I was in college with my infant daughter, single mom at that!

Well at that I ended up having to withdraw from college because these headaches were so over bearing and the medicine was not helping. I would take visits to the ER and over time I was treated as if I was some pill junkie looking for my next fix! When actually I just wanted some kind of relief! When I would get them around my daughter I would make sure her bedroom was very childproof safe and I would baby gate her room and lay on her floor with my pillow and blanket in tears and do my best to interact with her during these episodes. Sometimes I would dose off to awake with her rubbing my head trying her best to make mommy feel better!

Once I realized these were not headaches I proceeded to see dentists and eye doctors. Still nothing.. Everyone insisted it was migraines, UNTIL I tried the dentist one more time. I begged the dentist to remove my wisdom teeth back in 2006. She insisted I did not have any but when she exrayed my teeth all she could see was my sinus was huge and that I had clenched my teeth so much during these headaches that I had knocked ALL of my teeth loose!

She recommended that I go see an ENT. So sure enough I did. He seen a sinus infection. Cleared the infection, did some allergy testing and discovered that I was allergic to everything I breathe and the unavoidable food groups. So he put me on allergy shots 3 times a week for about a year to start to build up my tolerance to my allergens. I went 5 years with not a single headache. It was wonderful.

Thought I finally found the relief I was looking for and I could have my life back! Nope not so lucky... In 2011 they hit me again. Yet another what seemed to be sinus infection. So the ENT again put me through allergy testing telling me that allergies change so we needed to see what the change was so he could give me the proper injections for my allergies! I begged him to research why I get these headaches. I can't be the only person in the worlds there has to be something or some kind of surgery that could fix whatever this was! Well he insisted that the only fix was allergy shots and I must have developed allergies during my pregnancy with my daughter as that was when these headaches hit me hard!

So once again I went on antibiotics and prednisone packs and allergy shot. But this time there was no relief whatsoever. So I went and got a second opinion from another ENT begging him that there has to be something wrong with my sinus!!! After he did his exam he explain that there was no sign of infection and nothing he could see with the sinus that would be causing these headaches that I am describing to him. Again I was accused of sealing pain killers.

I got very upset and frustrated because at this point I had been seeking some kind if relief since 2011! I explained to him that I was not trying to mask the pain with more medicine I was looking for answers and a possible solution. This was just a few weeks ago and his recommendation was for me to see a neurologist. The thought would have never crossed my mind. I was so convinced it was my sinus. The sinus and allergies are only part of the problem and during this season is also a trigger. So I went and seen the neuro last week and after telling him my story he was so amazed he went to get the other doctors in the practice.

He was so amazed with the journey I have been in to find a solution and the fact that I have dealt with these for 17 years. I had a small sigh of relief to just hear that there was a name for what I was going through. He has started m on a daily medicine called indomethacine. Very little relief. It is to the point that even though ibuprofen and excedrin don't help, I have eaten so much my stomach hurts!

I am scheduled to go back and see him at the end of February to see if this medicine helps. I am hopeful but at the same time would like some relief in the meantime. There has to be something that can help me get my life back!!!????
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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Kime
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Re: Just want my life back!
Reply #6 - Feb 5th, 2013 at 3:55pm
 
My bad! I will try and be more grammar and punctuation specific during these headaches...

These headaches do make it hard to function.

as well as I found this site and was trying to post from my mobile device during a 3 month headache.

again my apologies. I will work on this.
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Re: Just want my life back!
Reply #7 - Feb 5th, 2013 at 4:17pm
 
I'm simply telling you how your message will get to more people.

It's a proven fact that when the average reader sees a huge block of text without visual breaks (like paragraphs), they simply move on.

Just trying to help. I can't stop you if you choose to take it personally.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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