Our lives have been changed. NDPH has cost us all something. A hobby? A job? A spouse who couldn’t stand by and support us through the pain?
And not all of those suffering with this have a dramatic story to share. Many just suffer in silence and push through to the next day. And the next day after that.
The following is the first in a series of stories that I will be sharing here on the blog and ultimately in my book about NDPH.
Do you have any thoughts or recommendations to share with Kevin? Have you had gallbladder issues related to NDPH or a medication you took to treat it? Please share in the comments!
I promised a book about NDPH, I know. I have 345,329 excuses. I won’t bore you with them. I’ve been collecting stories from readers around the world for ages now and in the process of putting it all together, I got stuck.
I had a Lyme relapse. NDPH came back as if it had never left. Life happened all around me. I started putting a ton of my writing energy into my parenting blog, where sometimes I feel like I am living a double life because I won’t allow myself to talk about my pain there.
So my half-finished project is still on the back burner while I try to get myself together.
In the meantime, I would like to start posting some of the stories I have received here on the blog, with the hopes that these stories will help you feel less alone in this battle. I know they have done that for me.
Thank you for all of your stories. Thank you for being there for each other in the comments section when I have been unable to respond. Your emails inspire me and sometimes they break my heart. Keep them coming.
Look for the first story in the next day or two. And watch for a little site makeover within the next week.
Is surgery an option you are considering to treat your NDPH?
Over the past year, there has been an in depth discussion going on here about a controversial surgery done by only one doctor in the world, Dr. Shevel in South Africa.
I have decided to move the discussion here, so that everyone can get the facts and chime in with their opinions. I have only edited out things that were not directly relevant in an effort to make the information easily accessible. You can find the entire discussion on the What is NDPH comment thread, but sifting through everything will take time.
The conversation began with a few readers looking for first hand information.
My boyfriend has been going to Dr Shevel for the last 3 months for treatment. Unfortunately, we have tried everything and nothing has worked. On Monday he will be going for the operation which will be performed by Dr. Shevel. This is our last resort so fingers crossed that it works.
A week later Maria writes:
Anthony does suffer from NDPH. He went for his operation last week. When I drove him home Monday afternoon he told me how the constant pressure that he has felt for years in his head was gone. I can also report that for the last week he has not had a headache, at all.
Dr. Shevel never gave us any guarantee that it would work, but as so many people are aware, when you are that desperate you will do anything to become a normal person again, even paying for the operation out of our own pockets due to the fact that our “Medical Aid/Insurance” refused to pay. From my perspective I have never come across a more kind and dedicated doctor.
Anthony had his stitches removed and the cuts seem to be healing nicely. We are keeping our fingers crossed that the pain never comes back.
Cal asked the following questions:
1. Had Anthony ever responded to migraine medication (e.g. triptans or DHE infusion)? These medications are vasoconstrictors, so I think a good response to them helps Dr Shevel in his diagnosis. I have had no response to any treatment.
2. Was Anthony’s NDPH of the ‘standard’ sort: sudden onset, unremitting, bilateral, tenderness over certain parts of the head, bilateral, without migraine features (i.e. auras, photophobia, etc)?
3. Did Dr Shevel diagnose a vascular or muscular component to Anthony’s headache? As I understand it, his surgery involves closing off certain blood vessels in the head/scalp. If the blood vessels are not the problem, he turns to muscles.
4. What tests were done in advance of the surgery and what conclusions were drawn from them?
5. How familiar was Dr Shevel with NDPH? It is, as I’m sure you know, an unusual and rare headache disorder.
I am wondering what sort of side effects there might be, and what is the safety factor of closing off blood vessels. It seems to me like you need your blood to keep flowing through all the vessels…
1. Anthony has not responded well to any migraine medication for many years. He has tried everything imaginable without success. Dr Shevel did recommend things like Maxalt, Cafergot and Tramecet.
2. Anthony’s headaches/migraines have always been very strange to me. He does not suffer from vomiting, photophobia or any other symptoms that I have when I get a migraine. He explains his headaches as a constant, dull, pressure that is sometimes manageable and lately have been crippling. This has affected his work (been off work 2 – 3 days a week for the last 6 months), he takes a great deal of medication to try and “knock himself out” so that he does not have to deal with anything or anyone, especially the constant pain in his head.
3. Dr Shevel diagnosed both vascular and muscular components. So they ligated the arteries where they cross the capsule of the temporomandibular joints, then they ligated the occipital arteries in the occipital area, the frontal arteries in the temporal area and the posterior auricular arteries behind the pinna of the ear. They then also cauterized one of the muscles on the top of his head that has a trigger point. Further muscles may need to be cauterized but that all depends on how Anthony is feeling in a few weeks.
4. No particular tests were done prior to the surgery, although you have to remember that this was a last resort for us as Anthony tried everything else that the Headache Clinic had to offer. Prior to the operation they do blood tests and a CT Scan.
5. How familiar the doctor is with NDPH I think you would need to ask him.
In response to Melissa’s question – Anthony spent 5 days at home after the operation. He has some muscular pain (which is normal after an op), some discomfort sleeping, as he has two cuts on either side of his head and two at the back. He takes anti inflammatories and that’s about it. Like he says, everything else he can live with for two reasons, firstly the headaches are gone and secondly the current side effects he is dealing with he knows will go away eventually. For a better understanding of what Dr Shevel does I would suggest you go to the Headache Clinic’s web site as this will explain everything.
Maria, six weeks later:
An update on Anthony is that it has been 6 weeks today since he had his operation. I am glad to report that he has not had a single headache for 6 weeks. He is however going back to the Headache Clinic on Thursday this week for a “follow-up” operation where they will cauterized some more muscles, as he still has the muscular pain. Hopefully after that he will be 100%.
Maria at 6 months:
Just to let you all know, it has now been almost 6 months since Anthony had his operation at the Headache Clinic, and still no headaches
A reader asked about the cost of the surgery…
The surgery is not that expensive, the biggest issue for you would be that the Headache Clinic only do the operation as a last resort, which means there are other things they like to try out before they recommend the surgery. Your best option will be to contact the Clinic directly .
Cal replied with specifics:
For international patients, the consultation and (if advised) surgery at Dr Shevel’s clinic costs around $20,000. Patients would then have to add the costs of travel to South Africa, hotels, etc.
As I understand it, Dr Shevel only recommends surgery if he diagnoses an arterial component to a patient’s headache. He does so by seeing whether the headache (his main focus is migraine) stops when pressure is placed (using a tight, hat-type device) on various arteries on the outside of the head. This does not sound like a particularly promising diagnostic tool for a headache type like NDPH (which is generally a constant, non-pulsating ache or tightness of varying severity), but there appears to have been success in the above case. Dr Shevel’s other main approach is to fit a specially designed dental splint. I can’t imagine international patients traveling to South Africa for that. I have not come across anyone with NDPH who has responded to them. So, the key questions are: (a) Does your headache have a strong arterial component? If so, it may have responded to triptans or to other drugs (IV- DHE) that have a vasoconstrictive effect (again, rare for NDPH sufferers). (b) Will Dr Shevel be able to accurately diagnose such through simple compression of arteries on the scalp?(c) Will ligating arteries stop the headache?
Dr Shevel is extraordinarily helpful in advising patients and clearly believes that he has come upon a real solution for some migraine sufferers. NDPH is different from migraine, however. It is continuous rather than episodic and it is often very difficult to tell whether any drug or treatment is making a difference. Further, the issue of vasodilation/vasoconstriction is even more complicated in NDPH than in migraine. Most NDPH sufferers don’t appear to have a headache that is ‘vascular’.
It would be great if Dr Shevel could advise upon, and a doctor in the US/Europe provide, the test he performs to determine if a headache has vascular components. A positive diagnosis made int he US or Europe might encourage some international patients to travel to South Africa for the surgery.
One reader’s opinion:
My biggest problem with Dr. Shevel’s claims is that no one else is commenting on them. He says he has had 85% success in 500 people, but no studies are written up. I sort of want to ignore “common sense” and just fly to S. Africa and give it a chance. Dr. Rozen, not disrespectfully, said, “desperate people will do desperate things”. He suggested there were still quite a few things for me to try before I decide I am that desperate.
This is where the conversation on the thread has ended.
I know that for myself, I would probably not choose this surgery. I completely understand the desperation and need to feel better, but I don’t feel there is enough evidence (as far as I can tell) that this is worth the risk of getting on the operating table.
There are some things that need clarity, such as the risks of the surgery. There are risks in every surgery, even those considered simple. Also, are there any possible long term side effects?
The one thing has become absolutely clear to me about NDPH after 6 years of suffering and four years of moderating this blog, as well as from my conversations with several doctors, is that the solution, the pain relief, is different for everyone. Some people will respond to the doxy treatment, some to nerve decompression surgery, for some people it is sinus related and for a few, botox has worked. That does not make any treatment sound very promising for everyone. It makes it simply another treatment to try and hope will work for you.
I would love to hear what you think about this surgery. How far are you wiling to go to find relief? And do you think that the pain would drive you to try something that your current doctor thinks is a bad idea?
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A cure, I know.
Over the years I have recieved many emails and comments from parents and spouses of people suffering from NDPH. The questions are almost always the same. They always contain the same desperation.
How can I help them?
What can I do?
I’m still struggling with the answer.
I want to know that the people around me care about how I am feeling on a daily basis. Then again, I don’t want to be nagged.
When I say “I’m okay.” It really means I’m dealing well. Often though, when I say that, I am met with, “Oh! I’m so glad you are doing better!”
That’s not what I said.
Maybe people with chronic pain have their own language. I seem to. Unless I go into great detail about how I am feeling, people don’t get it. And when I go into great detail, they get discourgaged, walk away and don’t ask again for a very long time.
Don’t walk away.
Don’t ignore it.
Don’t pretend the pain doesn’t exist, but don’t focus on it all the time.
Help me get my mind off it.
Ask me what I need, because it changes day to day, hour to hour with the pain.
If you look closely, you can see where someone is struggling. For a while, when my girls were younger, a nap would have made all the difference in the world. Once, a friend took the time to research for me. I felt so incredibly supported and realized that I was really lacking the support I needed on a regular basis.
Our experience needs to be validated. DO NOT minimize the pain or the effort it takes to get through the day. DO NOT compare NDPH to that migraine you get once a month. It’s not even in the same ball park.
NDPH makes the people around us feel out of control, that is, if they fully get it. And maybe that’s the closest to our world that they will ever get.
Good for them.
What do you need? What would you tell your spouse / mother / friend to do to help, if you could be totally and completely honest?
Please share your thoughts in the comments.
Is it possible there is a treatment out there for NDPH that your current doctor is not aware of? If you are being treated as a migraine patient, then chances are there is more that can be done. From my own personal experience, and the countless emails I have recieved over the years from fellow NDPH sufferers, I know that this headache will not go away with a migraine medication.
Finding a doctor who understands and specializes in treating NDPH is tough. There are not that many of them, unfortunately.
For me, finding the support of a knowledgeable doctor was vital. Dr. Todd Rozen at Giesinger Medical in PA was that doctor for me. He may not have a cure, but he offered many options.
Previously, I had seen a doctor at the New England Center for Headache in Connecticut. They are knowledgeable about NDPH, but I don’t feel that they were at all cutting-edge. They can help you get an accurate diagnosis, but beyond that, I do not feel comfortable recommending them based on my personal experience.
I would like to put together a list of NDPH doctors, and for that I need your help. Will you take a moment to leave a comment and share with others any information you may have about a doctor who specialized in treating NDPH?
If you are looking for a doctor in a specific part of the country and don’t know where to go, leave a comment as well and I will try to find a recommended doctor for you.
Please take a minute to help! Share any information that you think will help our readers here.
Last month, I hit the seven year mark with NDPH. I also reached my 40th Birthday.
I didn’t really want to celebrate either of them. Do you blame me?
I’m still being treated for Lyme (one year and four months). The details of my treatment aren’t important at this point.
I still have pain. I try to deny it. When all the pain seems to go away, I am so happy that I go around telling everyone that I am finally better. Then it comes back and I pretend it hasn’t. I pretend to be fine until I can’t pretend anymore. Then I get so angry that I cry, because I’m not fine.
Today, as I sit here writing this, my head feels like it’s going to explode. I would almost welcome the explosion if it meant the pain would stop.
I’m closer to fine. Really, I am. I’m closer than I have been in years. It’s progress, even if it isn’t a cure. I can’t help wanting a cure. I don’t want to admit that 7 years is a long, long time to feel like hell. I don’t want to admit that there is a part of me that fears that it will go on forever.
I hate the pain. Sometimes I find myself hating people who have no pain at all and complain about stupid, stupid things. I find myself jealous of what other people can accomplish because they aren’t distracted by pain. And then I feel shame, for feeling hatred and jealousy.
I’m just being honest. Are my feelings so unique? I think it’s part of the process of learning to live with chronic pain and never truly being fine with that reality.
And now I’m complaining again. I usually try to be upbeat and encouraging for all my readers here, but maybe we all need to vent.
Do you feel like complaining? Ranting? Getting it all out? Has NDPH ruined your career? Your marriage? Your dreams? Do you feel like less than you want to be? Less than you should or could be?
Tell me about it, so I don’t feel so alone in this. I will certainly understand.
Wishing you a low pain day, as always-
I’ve heard this same question asked consistently over the past seven years. The answer differs, depending on who you ask.
Although I considered it, I never got around to trying it. I kept putting in off and trying other things instead, because I am cautious. At the time I was considering it, insurance wasn’t covering the cost of injections to treat headaches, even though there was some evidence to prove that it is effective.
- I’ve heard NDPH patients rave about how it works for them.
- I’ve heard others say the injections didn’t even touch the pain.
- I’ve heard accounts of temporary paralysis of the eye muscles.
- I’ve heard people say that the treatment worked for a while, then stopped working.
Is it worth trying? I would say yes, if there is a chance it could stop your pain. Be sure to evaluate all the risks before you make your decision.
Have you already tried botox injections to treat your NDPH?
Please share your experience in the comment section below.
It has been 11 months since I was diagnosed with Lyme and nearly 7 years since my New Daily Persistent Headache began. I think I am finally recovering. I think I am ready to rebuild my health.
I still have headaches, but not daily. Sometimes not even weekly. That alone is something to be tremendously thankful for – and I am.
I haven’t come out of this without a few battle scars. My mind is not crystal clear like it used to be. Okay, maybe it was never crystal clear, but now I have trouble remembering things, occasionally I type words that are different than the words I mean to type and things get generally mixed up around here. And no, I’m not that old that this could be chalked up to age.
By the end of the day I have trouble walking up the stairs because my legs hurt (typical Lyme). And 11 months of antibiotic treatment has left my digestive system in a bit o a mess.
I’m done complaining. It’s been a long road. I’ve accepted that I will never be who I was before this. It’s okay. I don’t have a headache today.
It’s strange sometimes. It’s been so long since I have felt well, that I am not sure how to handle it. I feel a little bit like an ex-con who is trying to fit back in to society after 7 years in prison. I fear that I will be thrown back into pain at any moment.
This is the best problem I’ve had in ages. I’m so thankful for it.
Wishing you all something to be thankful for this holiday season.
I received another personal story this week that I would like to share. Although I did not find a cure for NDPH with this method, it may work for you. Clearly, relief comes in different forms for different people.
The following story is from Auli Peltonen in Finland:
“Hi Amy and all people who suffer severe headaches every day!It’s been just about six months ago when I healed from my daily, terrible headaches and now I feel up to sharing my story;Just like everybody who suffers this awful condition of headache, every single day, some days you can tolerate it and some days you just want to jump from the roof.I had my headaches for 188 days and that felt so terrible, I wouldn’t wish it for my worst enemy.Well, you all know what I’m talking about…From the beginning, I was very eager to find out what’s causing this pain, saw so many doctors I can’t even count them anymore, tried too many medications, some of them made me feel even sicker, tried acupuncture, massage, exercise,all different doctors and medications…nothing helped!I was told by chief physician that they can’t do anything else for me but try different medications and hope something would help. I was totally depressed and amazed by the fact that they “turned their backs” at me.I was supposed to stop gradually one medication and start a new one, then I decided to have a little break from medications;I felt that I was pumped up with all these meds and wanted to cleanse myself for a while before starting a new medication again, I figured it couldn’t hurt me since headache was there every day anyway…might as well take a tiny break.AND THAT’S HOW I HEALED!!After I stopped all medication, it took about one week for all the other side effects to go away and suddenly I woke up one day and didn’t have any headache!!The feeling was so unreal, I bet you can all imagine how amazed I was…”listening” to my head, when would it start again. One day pain free, then second day pain free, third day…Now it’s been a little bit more than half a year of pain free lifeIt took quite a while for me to realize that this is normal state, headaches are not coming back, I can finally live my life again!!What I’m trying to say; try to be brave, loose the medications totally for a while, give your body some healthy times without any meds and hopefully your head will thank you like it did to me.What do you have to lose?I wish you all better times, be critical, doctors are not always Gods.-Auli “
I recently received a personal story from a reader about her struggle with New Daily Persistent Headache and the treatment she used to lead to a recovery.
I’m sharing it here with the hope that it will help someone reduce, or even eliminate their pain.
From Carla in San Antonio:
” I was diagnosed with NDPH back in January 2010. My headaches started late November of 2009 and after visiting several neurologist; I was finally given the correct diagnosis. The reason I am reaching out to you and everyone else is because I want to let everyone know that there is hope out there. I lost an entire year of enjoying my 3 yr old because I was in bed with so much pain. I was extremely sensitive to noise and well, 3 year olds make plenty of wonderful noise. Maybe it’s premature but I’ve been NDPH free for 2 months. That in itself is a miracle. I wanted to let everyone know what helped mine go away and maybe give some hope out there to those who are still suffering.
The doctor that diagnosed me was Dr. Randolph Evans from Houston. Then my follow up doctor was Dr. Yanko Yankov from San Antonio. I’ve been through every test (MRI, MRA, MRV) and have taken so many medications including the worst one, Topamax. Dr. Yankov shares a facility with a physical therapy team. I asked him if we could try physical therapy as part of my treatment and he definitely thought we should give it a try. He is a wonderful doctor with an amazing bedside manner. We basically treated what could be some triggers. I had a lot of tension in my neck and back so I went to physical therapy. I was given massages and treatment to ease the tension and I also saw a chiropractor for adjustments. The physical therapy was the trick. I started going 2-3 times a week and eventually went down to once a month. I saw results within the first two weeks and I dwindled off my medication. I also had a tendency of grinding my teeth so I went to an oral surgeon (Dr. John Young- San Antonio) that made a “proper” mouth-guard that I wear every night. The headaches never fully went away until recently but I noticed incredible results and my headaches were more manageable and less frequent. I hope this is helpful to anyone out there. I understand how incredibly painful it is to have this condition and how it can test your faith. Try to find the triggers and alleviate them one at a time and hope your pain improves and eventually goes away.”
If you have any questions for Carla or for me, please leave them in the comments section.
Wishing you a low pain day-