Newbie in West TN - Frustrated and Unheard

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Newbie in West TN - Frustrated and Unheard

Post by lissah on Thu Jul 26, 2012 3:52 am

Hello everyone. It has taken me awhile to find this site but today I felt desperate and searched until I found a real forum where real people who know and understand are. I am a long time sufferer of migraines. They intensified in late 2005 after my dad passed away and have been a major source of problems in my life. In 2005 I was diagnosed as having chronic cluster migraines. I had one migraine that lasted 6 weeks. My neurologist at the time tried everything and found no cause or solution. I have had numerous CATScans but they never show anything and for medical reasons I am not allowed to have an MRI.

The reason for my desperate search for understanding support from those who understand what I am dealing with is because for the first time in probably 3 years I am fighting a migraine I cannot seem to beat. It woke me up last Wednesday, July 18, 2012, at 4 am. I still have it today, 7 days later. I have fought and avoided the ER so bad, but I am not sure if I can fight that off much longer. They treat me horrible when I go to the ER, treat me as though I am faking it. I do not have health insurance so finding a neurologist seems to be completely out of the question. So, this time I am fighting this alone. It is getting so bad that I can't fight my way through it, like I usually do...you know keep on keeping on!! This migraine is all over the place too, not in the one spot it usually hangs out. My stomach is staying twisted up, sometimes my vision gets blurry...none of this is good because I commute 1.5 hours one way for work. In the afternoon when the migraine starts to reach its peak and its the heat of the day I have make that drive back. I am seriously considering quitting my job because no one seems to care or understand what I am dealing with.
At home my boyfriend tries to understand but he doesn't. I can see that because he doesn't think about how even turning the lamp on hurts or turning the TV up a little echoes through my head. He is pretty much lazy so getting him to clean up the kitchen is like pulling teeth.

I feel very alone, unheard, misunderstood, and to be quite frank ignored, like nothing is wrong at all.
Lissa
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Re: Newbie in West TN - Frustrated and Unheard

Post by Laura on Thu Jul 26, 2012 4:45 am

Lissa, I am so sorry that you are so alone with this. And I understand how you feel about going to the ER. Is there any sort low cost or free public health clinic you can go to? Do you qualify for government assistance like Medicaid?

How have you treated your migraines in the past? There are different kinds of headache and migraine conditions. Where is your head pain located? You mentioned stomach pain and blurry vision. Do you have any other symptoms? How often do they occur and how long do they usually last?

I wish I could wave a magic wand and make it go away. I've had much difficulty treating mine and I've tried so many preventative and abortive medications. The best treatment for me so far seems to be ice and sleep.

I do hope for you that this one ends soon.
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Re: Newbie in West TN - Frustrated and Unheard

Post by lissah on Thu Jul 26, 2012 5:04 am

Back when I was married and had health insurance my migraines and me to be frank were treated much better. Since being divorced and no longer insured I am treated differently. I do not qualify for any government assistance. I am under pain management currently for another medical problem. So I do have Oxycodone, but it has gotten to where it only knocks the migraine back a little. This migraine will play hide n seek...it will hide for about an hour then pop right back up worse then when I thought I had it beat.

My migraines almost always start and stay in the same place, right side of my head, centered near the top over my right eye. I can usually cover the spot with my hand. This one is acting different. The sever pain is in the same spot but then a numb tingling feeling spreads across the top of my head to the left side and then down to this cyst on the base of my skull.

no one seems to care or even notice that i have been suffering for a week now. as we speak i have told my fiance on messenger three times i have a migraine, but yet he seems hell bent on starting an argument with me. i just don't understand anymore.
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Re: Newbie in West TN - Frustrated and Unheard

Post by Dr Pav Khaira on Thu Jul 26, 2012 5:20 am

So sorry to hear you're having problems! This is a great support community and people here do listen Smile

Hope you start to get resolution soon

Do you get migraines this bad frequently?
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Re: Newbie in West TN - Frustrated and Unheard

Post by lissah on Thu Jul 26, 2012 5:30 am

I hadn't been. Over the past year they have steadily gotten worse. Averaging about a day long but about 2 a week. Now they are lasting a couple of days and I am having anywhere from 2 to 4 a week. This is the first one i have had in a long time that just will not give up. Seven days of one migraine is wearing me down so bad.
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Re: Newbie in West TN - Frustrated and Unheard

Post by Tee on Thu Jul 26, 2012 8:49 am

Hello Lissah and welcome- pleased you found us real people xxx

I am however sorry to read you are having such a bad run.......... first things first you need to 'stop' and rest......pushing yourslef is not going to help at all......... so the kitchen is a mess leave it - go to bed - he will see you need help once he runs out of plates Wink And take a few days off work........ I totally understand the need to carry on, but with migraine you have to learn to stop.

The USA health system 'sucks' as you say... but if you need to go to ER please do go....

It does sound like you need a preventive - but I am not sure how the system really works out there - maybe one of the other USA migrainers can help here - but if you have no insurance and do not qualify for government help - what do you do?? are ther charity or church run hospitals / clinics?

But in saying that I am beginning to realise that you do need to do some self help with your personal migraine management plan - do you keep a diray? Do you know which type of mig you have? Do you know your triggers? Do you do any form of relaxation?

Sorry - so many questions- take you time... you are not alone xxx

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Re: Newbie in West TN - Frustrated and Unheard

Post by Laura on Thu Jul 26, 2012 9:33 am

Each U.S. state has a different system

Maybe one of these sites may help - if you haven't already checked them out before.
http://findahealthcenter.hrsa.gov/Search_HCC.aspx
http://www.covertennessee.gov/
http://www.ncsl.org/issues-research/health/state-pharmaceutical-assistance-programs.aspx#Discount



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Re: Newbie in West TN - Frustrated and Unheard

Post by Tee on Thu Jul 26, 2012 10:03 am

Thanks Laura x

PS loving the new pic x -

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Re: Newbie in West TN - Frustrated and Unheard

Post by lissah on Sat Jul 28, 2012 5:52 am

Thank you Tee. Today makes 9 days with one migraine. I have not gone through a migraine like this in several years. No one really seems to understand what having a migraine this long is like and how bad it makes you feel.
Stopping is not so easy for me. At work I have to be here, boss requires it, plus I now have to share my company car (one of the reasons I even took this position so far from home) with the marketing representative so under no circumstances am I allowed to miss work. I am a full time student on top of working full time so even then my stopping is very limited. I know that I need to stop and rest but getting a full day to do that seems almost impossible.
I am under pain management for other unrelated health issues. I have called them today to let him know about this migraine and I am going to the ER this evening. I mentally and physically cannot avoid it or stop it on my own.
I was on Amtriptyline to attempt to control the migraines. When it stopped working my doctor changed me to Vistiril. With no insurance it is almost impossible to afford any of the new migraine preventative medications on the market plus the concern they will do my heart like the past ones; Imitrex, Maxalt, ummm I forget the others they had tried years ago. Imitrex is the only one that came close to helping but it sped my heart up so bad they had to take me off of it.
I do not keep a diary of my migraines, but it is a good idea since they have escalated to the point they are at now. The only thing I have ever been told is that I have chronic cluster migraines. No one has given them a name. Usually I can take a pain pill, go in my room. Dark, cool, and quiet. An ice pack over the primary source of pain area, usually right side and I can literally cover it with my hand. Sometimes adding to that I can place my head under running cold water, over the painful area. Then eventually, if I am lucky I will fall asleep and wake up with it gone. Those tricks are not working this time.
I am very glad I found this forum. Only place where I know I can talk to others that totally understand. People that do not suffer or even occasionally suffer don't really get what you are going through when you have to live and cope with multiple migraines a week, let alone one that lasts for days.
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Re: Newbie in West TN - Frustrated and Unheard

Post by lissah on Sat Jul 28, 2012 6:05 am

Laura, thank you for the links. I will check into them. I do know that because I am under pain management that I cannot get another doctor unless I end my pain management. Since I do not have health insurance, need a surgery that costs well over 15K in order to end the pain management my hands are pretty much tied there.
The horrible thing is that in the US there are many covered individuals that shouldn't be covered and then there are those that need it but can't get it because they are part of the working class. Two years ago when my implant quit working, the internal battery wore out (10 yrs was its lifespan) I went to my local Human Resource Office to attempt to get temporary health care. I was told I made too much money, then I was told that they are no longer taking adults on Tennessee Healthcare. If you are an adult, make over 27k a year, and not on disability they can't help you. But if you go through the process, fake a disability you can get a check and insurance. But if you have a real disability you have to fight tooth and nail to prove you have the disability and by the time they finally agree you are disabled you are so broke that no amount of back-pay or health insurance can bail you out. I work for an employer that only employs myself and two other people so he is not required to provide us with health insurance. Because of my preexisting conditions no one will reasonably cover me then they want to put me under a preexisting clause that releases them from paying for anything that is preexisting for 6 months up to one year; well that was the last time I checked which was about 2 years ago when my implant no longer works.
Sorry to rant. It is all very frustrating and in my opinion unfair. I make too much to get help but I barely make enough to support myself and my family let alone get health insurance.
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Re: Newbie in West TN - Frustrated and Unheard

Post by Laura on Sat Jul 28, 2012 8:05 am

You seem to have a very complex situation. If you don't mind saying - what is the other pain condition and what is the implant for?

i am so sorry things are so rough. I finished grad school recently with chronic head pain and other migraine type symptoms and worked part time. I can hardly imagine working full time. You are quite strong to be handling all you are handling. I certainly hope you can get some relief soon.
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Re: Newbie in West TN - Frustrated and Unheard

Post by lissah on Sun Jul 29, 2012 5:18 am

I do not mind telling you of my other condition. About 12-13 years ago I was diagnosed with a condition called pelvic floor dysfunction. Basically, in the easiest terms to explain, imagine having multiple charlie horses at one time in one spot that you cannot rub out. That is the pain caused by the pelvic floor dysfunction. The muscle of my pelvic floor, primarily on my right side, no longer know how to relax on their own.
In July of 2009 they surgically installed a neuro-interstim implant. This is for pain control of the right side of my pelvic floor. It stimulates the muscles of my pelvic floor with little electrical shocks that keeps them relaxed. I have an external remote that allows me to increase or decrease the intensity of the stimulation. About 2 years ago it stopped working. The battery in the internal implant has a life span of no more than 10 years. I could never turn my off, it was on 24/7 which depleted the battery a little faster.
For this reason I am now under pain management to attempt to control the pain as best as possible since the new surgery will cost approx 15K. I also suffer from a hereditary condition called essential tremors. My tremors just began to show about 3 months ago. This is being controlled by proprananol 50mg.
I did give in last night and went to the ER, they treated me fairly. Nubane and Stadol are both in short supply here so they had to give me a Demerol and phenergan. It did not knock me out like the Nubane did, nor did I sleep soundly and nonstop. I did wake up this morning with the migraine gone and only a risidual headache. Resting today outside of doing homework to eliminate the headache. I am half way through my Master's Degree in Business Administration.
Thank you for all the advice and support. I think I have found a place where I can talk to people that can truly relate to my condition. I am doing my best to try and educate my family and close friends. Before going to the ER yesterday I did call my pain management doctor's office to let them know what has been going on and that I was going to the ER. I thought letting him know ahead of time that I had gone 9 days with a migraine would give him some time before my appointment to explore other possible avenues to attempt to regain control, even if just for a short period of time.
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Re: Newbie in West TN - Frustrated and Unheard

Post by Tee on Mon Sep 03, 2012 7:29 am

Lissah - How are you doing now? Has the pain stopped completely?

Reading through - Have you ever had DHE? You seem to respond to triptan so I do wonder if DHE would help you?

xx

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Re: Newbie in West TN - Frustrated and Unheard

Post by lissah on Tue Sep 04, 2012 3:31 am

Hi Tee,
I am doing better here lately. After suffering from that migraine that lasted 9 days and no care or concern from my boss of 4 years my (now) husband made a choice and I turned in my resignation. Since I quit and do not have to make that 1.5 hour commute to and then from work 5 days week my migraines has lessened in quantity and intensity. Still fighting them but not like I was.
DHE.....what is this?
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Re: Newbie in West TN - Frustrated and Unheard

Post by Laura on Tue Sep 04, 2012 10:51 am

DHE is a drug that was used to relieve migraines before the development of triptans. It is is still used, but is generally not one of the first drugs doctors will prescribe. I tried it via injection at home, but did not have any success. Some doctors will provide it to you as a hospital inpatient.

http://headacheandmigrainenews.com/dhe-migraine-treatment/

http://migraine.com/migraine-treatment/dhe-45-for-migraine-headaches/
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Re: Newbie in West TN - Frustrated and Unheard

Post by lissah on Tue Sep 04, 2012 11:15 pm

I have never been given DHE and after reading a little about it I am not so sure it would work for me. I have tried several migraine preventative meds and those meds you take at the point of onset; like imitrex, maxalt, fiorcet, topamax, depakote, and axert. Imitrex, Maxalt, and Axert all made my heart beat speed up. In the case of Imitrex I did get eventual relief from my migraine but I had to suffer through the chest pain until I reached a point of total exhaustion and fell asleep. So I would be leery of DHE.
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Re: Newbie in West TN - Frustrated and Unheard

Post by Tee on Wed Sep 05, 2012 7:21 am

I am pleased to read your doing better - and quitting work may take a while to get used to - but it really will help....... waking up natural with me is a biggie - when an alarm goes headache follows.....

DHE might be worth mentioning to your doc about - it is not a preventative - its a stop cycle med........ if you were ok with Triptans then it might be one to keep up your sleeve next time you get in to a long one - which I hoep you do not.....

But you have made a life style changed and that will help loads and give you time to work out a few more xx

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