I have been supporting my husband thru his neuralgia, making doctors appts bring him to the hosiptal since March. When we go to the hospital and tell them he has GPN they tell us to see an neurologists but the problem is no Neurologist in our area takes his insurance. We only saw an neurologists once in Aug she is the one that diagonse him and we had to pay her in cash. We dont have the cash to pay to go back to her and he is getting so much worse. He will go into such flair ups and seziures and he yells out all the time that the police have been here because he is screaming and the police have been so supportive knowing that he is not in his right frame of mind, but told us that the neighbors want peace and with him being so loud that they have to come. They have come to our home 3 days in a row and tell him that he has to stop screaming and he tells that that he is trying but he is so much pain and doesnt even realize he is loud because when he gets these flair ups he cant hear out of his left ear anymore. When the police came today they told me and my husband that they know he has this conditon GPN but if they have to keep coming back to quite him down that they will have to call our landlord and we will be evicted. I am trying everthing that I can to help him get medical treatments but find a doctor who can help him. To make a long story short because of condition getting worse he lost his job today and if the police come one more time we will be homeless. I love my husband and am trying my best to be there for him but when U have a medial condition like he does and they see him so bad and seziurs and slurring and not in the right frame of mind how can now take care of us if they evict us because of his conditon? This is Christmas and all I have ask the Dear Lord is to help us and get him the help he needs but in the mean time worry if he has a flair up and I feel for our neighbors and sorry they have to hear him yelling but to evict us because of his medical problem is one thing I thought would never happen. Please keep us in your heart and prayers this Christmas and if anyone has any suggestions any at all would be appericate.
Hi Carol,
Where about do you live - which part of the world? Is your husband on medications? I am sorry I dont have any advices yet but I'm definitely keeping you in my heart & prayers. Its a tough situation to be in and I feel for you. Please hang in there. Merry Christmas to you and family..
Where do you live? Maybe someone can recommend a neurologist in your city and the doctor can give you a break with the doctor fees. He needs the right medication. I'm praying for you.
Hi Carol,
My Mom is a retired Social Worker and I asked her for some advice.
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She suggests checking with your state for what resources are available in your area.
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There might be some free or sliding scale clinics.
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What is your support network? Example: Family, Friends, Church, etc…
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He needs a formal letter stating why he was let go. (This will help if he ever needs to apply for disability.)
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If you haven’t done so already, speak to your neighbors and landlord explaining what is going on and thanking them for being concerned enough to call the police (you could be beating him for all they know).
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If you decide to speak to a lawyer about disability be aware that they might say they take nothing, but it is often based on being paid after the disability is awarded. It’s VERY hard to get disability. Be sure you know what you’ll be paying later.
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Is there any way to retain insurance from your husband’s previous job? Get or change the plan through your job?
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See if you can get a letter from the neurologist stating his condition and maybe even symptoms. He shouldn’t have to see the Dr to get this.
Now my input. 1. I would recommend explaining your situation to the neurologist when you call for the letter, they might be willing to work with you, but if you don’t ask you won’t know. 2. See if your husbands primary care doctor is willing to prescribe some of the common medications for this condition. It would be good if you went prepared with a list in hand.
Best of Luck. I will keep you in my prayers.
Hi Carol,
Are you in the United States? If so, can you go to the Emergency room when he is having an episode? I've heard of peopel doing that and the ER will provide meds. If he can get on Tegretol that is not an expensive medication at all, it's old and has a generic version. Also, a lot of people take Lyrica with success. I use Cymbalta and Klonopin.
I do not have seziures though, that part is not GPN. If he is literally having seziures I would rush him to the ER or call 911 for an ambulance when that happens. If he is slurring and out of his mind it sounds as though something else besides a GPN pain attack may be going on.
Hugs,
Donna
First of all Carol,
My heart goes out to you and your husband. I know too well how difficult it is to be seen by a specialist and being diagnosed correctly.
I strongly agree with Donna. I do not believe the Glosso illness is known for seizures. I'd take him to ER and mandate that they run tests to find out what that could be. I do know the pain is horrific when it comes to neuralgia. The only thing that helps me is HIGH doses of Tegretol. See if his MD, DOC will prescribe it. That will take care of seizures and neuralgia pain.
The first thing is to get his pain under management before you can conquer anything else. I take tegretol, 200 mg 5 times a day until the nerve calms down. Without that medication and dosage, I'd be in excruciating pain.
Take Care,
As always, I keep everyone suffering from this illness in my prayers.
Lee
Hi Carol, I’m sorry that you are going through this ‘trauma.’ Its not clear to me what sort of help you are after. Could you let me know (I) where you are based (ii) if you are looking for a neurologist and (iii) if your husband is currently on any meds?
Thank U for your reply, I live in NJ and the neurologist took him off his nerve blockers because the side effects made him worse. He is on no med's at this time
GomeraM said:
Hi Carol, I'm sorry that you are going through this 'trauma.' Its not clear to me what sort of help you are after. Could you let me know (I) where you are based (ii) if you are looking for a neurologist and (iii) if your husband is currently on any meds?
Sorry I live in UK so can not help you with advice but I will send you healing thoughts. x
When in valium withdrawals when it was abruptly taken away, I had some kind of seizure combined with an episode. I'd never experienced anything seizure like prior to but this combination was mind blowingly awful.
Me, I went to the ER, where I was told I was a drug addict (in spite of blood tests showing I was on less of a dose than even prescribed by my doctor), had the nurse saying 'he have to check for lumps in throat for insurance reasons' sarcastically, while he slapped the area around my throat playfully, even grinning and humming in a sing song way. I was sent to the psychiatric section as punishment, and told I was a conversion disorder patient. There I listened while nurses gossiped on the phone about my medical records.
I couldn't scream as speaking was so painful it was literally impossible. It was like I was almost leaving my body, and pain was replacing my entire consciousness. If I could scream, I would have screamed, so very much. It's like there is nothing you can do. You feel so incredibly hopeless. People scream when in despair and when tortured by pain.
I don't have very good advice. I've had very bad experiences, and I haven't been properly helped in my opinion. I have sympathy, and I advise you to do whatever you can to protect your husband if he can't protect himself. Take anything positive you can from the medical community, but if they start to treat him like they did me, please try to choose options of survival in any way possible. I refuse to allow medical 'professionals' to kill me by denying the existence of my pain.
Thank you for loving him and being there for him during these horrific times. Those qualities are really rare. It's very possible he'd be dead without someone to be there. Stay strong, and take care of yourself too. It must be very hard having to care for the ill, it will exhaust you as well.
Some additional thoughts. I'm far from an expert on this, but since he lost his job due to this illness can you get your husband on some kind of state based unemployment medical benefit insurance prior go applying for disability?
Is there a department of social services or something nearby. In my state we have 'poor people' insurance that some doctors are willing to take. I googled a bit into New Jersey to look around. Maybe this department? A social worker there might be able to help.
http://www.nj.gov/humanservices/
If your husband is having seizures, some kind of medication will likely control that aspect. A lot of times in an acute seizure, administring a benzodiazepine will stop them literally on the spot, but there are longer term medications which are also used (Tegretol for example) which is has also been effective for some people with glossopharyngeal neuralgia.
I'm just wondering if you can find some doctor, somewhere, that will prescribe something to control as much as is possible with maybe alternative insurance. For my condition (suspected glossophayrngeal neuralgia) I've personally found cymbalta and valium most effective so far. So I've reacted similarly to cincigal (Klonopin is a sister benzodiazepine).
But as I said above, if you abruptly stop benzodiazepines, they can cause seizures even in those not prone. Somewhat recently the DEA put all benzodiazepines on the controlled substance list (the same lists that include heroin, cocaine, and so forth) and there has been an enormous moral panic and social backlash against these medications. People who found medical benefit are being punished and lumped in with crack addicts.
So if your husband can find a medication to be prescribed that is effective, that doesn't have any social stigmas or DEA regulation, it would be safest avenue for his health so he won't have to face these kinds of battles as well.
I have been suffering from gpn since March myself. I am on the maximum dosage of topamax 200 mg twice daily which makes the randomized attacks and heat more constant and less severe. To further reduce the severity my gpn suggest acupuncture. He did my treatments. Once weekly for a month. We are trying to go monthly now unless I flare up then I can call and go back in. It was 100 per treatment not covered by insurance but worth every penny. I missed some dosages of meds and had no flare ups like I had before. I definitely think it would be worth a try
My niece was in a somewhat similar situation. Her baby was born with a heart defect and she had no medical insurance at the time. Her baby needed heart surgery to correct the problem. She called a local TV news station and they did a story on her and her child. They gave out information on how to donate. Then my niece organized a formal donation after the news coverage and was able to raise over $100,000.
Don't discount human generosity. You will need to get your story told to a wide audience. But from my nieces experience, people were very generous. It is one of those stories you rarely hear but makes you proud of the human spirit
Best of Luck,
Gipp