New Daily Persistent Headache Support Group

hello all I started with these headaches in July 31,2011, after having my appendix out. I have not had one day without a headache nor one minute. Most days I just lay in bed and just watch tv or sleep one of the medications gabapenton I am on makes me sleep during the day. I had to stop working which I had just started working at walmart two months earlier due to the fact I needed a better paying job and walmart was paying better.

When I started getting the headaches I would go to the hospital to try to get relief due to the fact my doctor was on vacation but the one on call recommended furecet that did not work nether did narcotics or anything else they gave me at the hospital. They did an MRI and saw nothing.

They sent me to a neurologist so I went and she had no clue what I had but prescribed toperamate which did not work. She went over the MRI with me and said the only thing that was wrong was something I had at birth. Then I had the worst headache I ever had a few days later and so she sent me to the er to get anor MRI and spinal tap. Neither one of these showed up anything. So after this she felt she could not help me anymore so she sent me to the headache center in Worcester Massachusetts which is close to where I live.

This doctor first thought I had a small blood clott so he put me on a medication to get rid of it and it made me dippressed. Then he gave me a sheet to fill out of my headaches of how bad they are. We also went over everything about my headaches and this is how he diagnosed me with NDPH. A this he put me on Cymbalta which does not work for me but he played around with the dose because others have seen results.

I have also tried a magnetic headband. Also I have tried going to a deep muscle massage.

Dr.markley has also put me on gabapenton at the same tme at the same time as the other three but I am on a really high dose. He wanted to put me on I believe naratriptan but my insurance would not pay. Now I am trying botox and it takes the second or third time and my next time is in june.

I applied for SSI in oct but they have not decided yet if I am eligible they lost my paperwork. I keep calling and getting in touch with them and oh ya they found my paper work.

Two weeks ago I started going to a therapist and she recommended a support group and that is why I looked this up.

Welcome! Thanks for the intro. Your insurance likely has a preferred Triptan med that they will cover. They get special deals on some, and some are now generic. I'd look up your formulary to see what they will cover and at what cost so you can tell your doctor. A lot of us with NDPH don't get help from Triptans, but its worth to try a few of them. Its great you are trying different types of treatments. Glad you are going to a therapist...I'm wanting to start that. I've heard it can be very helpful to talk through what you are going through and get some tips on coping. Sometimes the Botox works on the first time, but its good your doctor knows to try 2-3 times. Mine wasn't willing to do that.

Trying these meds can take a few months to see if they help. Its a game of patience. Be persistent with the SSI. There is a forum here for disability that could be helpful for that. I've heard folks recommending to get a lawyer as they only get paid if you get approved (a percent of the back pay). Its normal to be denied at least once. Unfortunately it can take months or years. Look into if your state has any disability benefit programs, if you are eligible for any health insurance, food stamps, etc. If the meds are making you so tired that you sleep all day, I'd ask for something to be adjusted. Sometimes a side effect just isn't tolerable. It can't be good for you to spend all day in bed. Hang in there! Best wishes.

Hi and welcome, I am glad that you have gotten diagnosed finally and have a doctor who knows what you are dealing with. It sometimes takes a while to find one of those unfortunately. Even doctors who have heard of it a little often have no idea what to actually do with someone who has NDPH, but it sounds like your doctor has dealt with this before since the meds he is picking are quite commonly seen here.

If the sleepiness is just too much, you may want to ask the doctor about tapering off the topiramate since you don't think it is helping and you are having so much sedation. That one does take FOREVER to see if it is going to work so depending on how long you have been on it he may want to give it a bit longer, but it may have had a fair trial by now and be able to start tapering off. You don't want to just drop it though since that tends to cause nasty side effects of its own. Sometimes doctors forget to take people off of things that didn't work, especially if they didn't prescribe it in the first place. It is worth asking about directly.

I don't know as much about the process for SSI as I do about the process for SSDI (my sister did the second one, but not for a headache). So I can't give much advice there. I wish they would have named the two things something totally different so people would be less confused about the two. I am not sure if you need a lawyer or how long the process takes. I don't think it is as hard as it is for applying for disability (SSDI), but I don't really know. Them losing your paperwork does not inspire a lot of confidence, but I am glad you are persistent and that they found it.

Oh that's not cool ya my doctor is willing to do anything to help me out.

No it's not good to be in bed all day but that is how bad my head it. I am on the phone with SSI a lot, I will look into food stamps.

Thanks for tips

Jess

Sorry I misunderstood...I had thought you were in bed all day because the med made you too tired, not that your pain was that out of control. Oddly enough I find I need at least a little distraction. Lying in bed all day would make my head worse. Working definitely makes it worse, but I have hung onto my job. FYI the disability forum here is: http://www.mdjunction.com/social-security-disability-advice. I just looked up the difference between SSI and SSDI...seems confusing. Hang in there! Best wishes.

Hi and welcome.

It's great that you have a diagnosis and a doctor that is willing to try meds with you. It sounds like you are already trying many of the more common meds which is a good start. It is a long and slow process trying to find the right combination, unfortunately.

I found I couldn't work after a year with the headache. Others manage it though. for me the noise and light of work and the stress were making my headache worse and I was exhausted all the time. I found being a home I could control my environment better and get more rest and have time to try new meds.

Hang in there and keep trying different things. Hopefully you will start getting some relief soon.

Enbee thank u I just started on a new med on wednesday not sure which one will post later...