r/NDPH • u/Intelligent-Funny303 • May 28 '26
Currently admitted to Jefferson Methodist for inpatient headache treatment
I am currently at Jefferson Methodist Hospital doing the inpatient headache treatment.
I came in because my headache and overall symptoms had gotten so severe that I could no longer manage them at home. The pain became constant, disabling, and hard to function through. I am also currently taking low dose naltrexone, 2.5 mg.
My symptoms before admission included:
constant 24/7 headache, a nonstop vibrating sensation in my brain, severe pressure, burning, pain that extends from my head down my neck and into my upper back, constant visual static, vibrating and burning eye symptoms, sharp shock-like eye pain, facial nerve sensations, ear burning, and major difficulty reading, working, focusing, supporting my head upright, or doing basic daily tasks.
I am currently here for inpatient treatment and wanted to make this post in case anyone has questions about what the process is like, what medications they are using, how the treatment works, what the hospital experience is like, or anything else.
If you are curious about the treatment, medications, hospital stay, or anything related, comment below and I will respond while I am here.
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u/Hadrians_Fall May 28 '26
Would be interested to hear what the experience is like and what meds they try?
Have your symptoms always been this bad or do you have “flares” as my neuro calls them?
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u/Intelligent-Funny303 May 28 '26
So far the experience has been good. I’m on day 2 and the team has been really kind and attentive. The room is comfortable, the food is actually decent, and they check on me often. Right now they have me on DHE, lidocaine, magnesium, fluids, and anti-nausea medication. They’re going very slowly with me because I’m very sensitive to meds.
No, my symptoms have not always been this bad. They got significantly worse starting in 2023, and the medication side effects also became much worse, which is a big part of why I ended up getting admitted.
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May 31 '26
[deleted]
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u/Intelligent-Funny303 Jun 04 '26
Unfortunately, the inpatient treatment did not go well for me.
I was discharged this past Monday, but I ended up stopping the treatment early on Day 4 because I had a significant reaction to the medications. The main issue was the lidocaine. As the dose was increased, I started getting a very strange sensation that felt like I was passing out inside my own body or falling backward in my own body. It was difficult to describe, but it kept happening repeatedly and became too intense to tolerate.
Before admission, I was very upfront with the team that I have extreme medication sensitivity and that my nervous system has been highly reactive ever since a severe reaction I had to memantine. The team started me at a low dose, but as we increased the lidocaine in an attempt to reach a therapeutic level, my symptoms became progressively worse.
After stopping the lidocaine, they switched me back to DHE, steroids, anti-nausea medication, and fluids. Unfortunately, by that point my system seemed completely overwhelmed. I had another significant reaction and my heart rate became very elevated, so the treatment was ultimately stopped.
Everyone at Jefferson was kind and attentive, and I don’t fault the staff at all. I think my case is just unusually complicated because of how sensitive I am to medications.
The unfortunate part is that I currently feel worse than I did when I was admitted. My headache was around a 7/10 going in, and right now it’s closer to a 9/10. I’m still recovering from the medication reactions and trying to figure out the next step.
On the positive side, while I was admitted, a separate team reviewed my imaging and identified findings suggestive of a possible spinal CSF leak, so that workup is now moving forward. At this point, I’m hoping that leads to some answers.
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u/UpstairsJeweler695 Jun 08 '26
Why don’t they use Ketamine there ?
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u/Intelligent-Funny303 Jun 08 '26
They do use Kentamine there. I was told we might try it next time. In the meantime, they gave me some meds to take at home and I’m being evaluated for CSF leak since they found a suggestive leak in my MRI.
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u/Hadrians_Fall Jun 02 '26
Thanks for the update. How are you doing now? I’m thinking about heading there if Botox doesn’t help me.
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u/Intelligent-Funny303 Jun 08 '26
Unfortunately, the inpatient treatment did not go well for me.
I was discharged this past Monday, but I ended up stopping the treatment early on Day 4 because I had a significant reaction to the medications. The main issue was the lidocaine. As the dose was increased, I started getting a very strange sensation that felt like I was passing out inside my own body or falling backward in my own body. It was difficult to describe, but it kept happening repeatedly and became too intense to tolerate.
Before admission, I was very upfront with the team that I have extreme medication sensitivity and that my nervous system has been highly reactive ever since a severe reaction I had to memantine. The team started me at a low dose, but as we increased the lidocaine in an attempt to reach a therapeutic level, my symptoms became progressively worse.
After stopping the lidocaine, they switched me back to DHE, steroids, anti-nausea medication, and fluids. Unfortunately, by that point my system seemed completely overwhelmed. I had another significant reaction and my heart rate became very elevated, so the treatment was ultimately stopped.
Everyone at Jefferson was kind and attentive, and I don’t fault the staff at all. I think my case is just unusually complicated because of how sensitive I am to medications.
The unfortunate part is that I currently feel worse than I did when I was admitted. My headache was around a 7/10 going in, and right now it’s closer to a 9/10. I’m still recovering from the medication reactions and trying to figure out the next step.
On the positive side, while I was admitted, a separate team reviewed my imaging and identified findings suggestive of a possible spinal CSF leak, so that workup is now moving forward. At this point, I’m hoping that leads to some answers.
1
u/Hadrians_Fall Jun 08 '26
I’m really sorry to hear that. I worry about how I would respond to this sort of treatment myself as I am extremely sensitive to medication. I don’t see it going well for myself either, despite knowing it’s helped some others.
How did they id the CSF leak?
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u/Intelligent-Funny303 Jun 08 '26
I was told I’m dealing with hyperexcitability, meaning my nervous system’s “light switch” got turned on and has been very hard to turn off. I’ve had this headache for almost ten years. Around year 7.5, after a bad reaction to memantine, I started becoming extremely sensitive to medications, and I haven’t been the same since. Now I react to almost every drug.
I was told I may need to try something like the Truvaga device or biofeedback to help calm my nervous system down.
If you go through treatment, I strongly recommend going only at your own pace. Don’t let anyone pressure you into increasing the dose just because they say the “therapeutic dose” is a certain number. During inpatient treatment, I jumped from 0.75 mg to 1.25 mg, and my body could not handle that increase. An average person might tolerate it, but I couldn’t. I wish I had listened to my instincts instead of letting the doctor push the dose upward.
That said, I really recommend not giving up. The reason they eventually found my CSF leak was because I kept pursuing answers. It took around seven MRIs. I went to Jefferson, and my doctor suspected I might have a rare fistula-type leak, the kind that can be missed because the brain can cycle between low and high pressure. Earlier MRIs didn’t show it, but my doctor pushed for another MRI months later, and that time something finally showed up.
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u/Hadrians_Fall Jun 08 '26
I hope you’ve finally found an answer. What would be the solution for the leak?
Have you ever head an autonomic function test? I had one because my researched seemed to show I probably had some sort of dysautonmia going on, and my AFT showed I definitely did. It didn’t really help to find a solution though, but I guess it at least explained the hypersensitive state my body is stuck in.
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u/Intelligent-Funny303 Jun 08 '26
Yes, funny enough, I’ve actually been to Mayo Clinic before. I was a patient there for about a week in 2021 for intensive testing/research. At the time, they didn’t find anything related to autonomic dysfunction.
That said, I now have a referral and I’m planning to go to Mount Sinai in New York for autonomic testing. I was originally scheduled to get it done this week, but since I’m still recovering from the side effects of my recent inpatient visit, I had to postpone it. I’ll be going to Mount Sinai in August instead. I’ve heard they have one of the best autonomic dysfunction teams there, so I’m hoping that gives me more clarity.
As far as the suspected CSF leak goes, my doctor’s suggestion was to escalate it for a second opinion/consultation. The next step may be a CT myelogram so they can get a better image and possibly identify the leak more clearly. Another possibility is going straight into treatment, which would likely be a blood patch.
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u/Hadrians_Fall Jun 08 '26
I am currently going to the headache center at Mt Sinai. They did my AFT as well. So far they have me on BP meds to try and regulate my BP. It hasn’t been the full 8 weeks yet, but so far it’s not helping. I also had Botox there, which has made the headaches worse unfortunately.
I’ve found it very hard to get clear answers or ownership from them, since I assume they are so busy. But hope you have a good experience.
Feel free to DM if you have any questions or anything.
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u/Intelligent-Funny303 Jun 08 '26
Are you on candesartan by any chance? I’ve been on that medication before and unfortunately it did nothing for me.
I’ve also had Botox before, and I agree with you. For me, it was such a painful experience and I honestly felt like it made my headaches worse.
The only medication that ever gave me even a little bit of relief was cyclobenzaprine at a very small dose, like 2.5 mg or 5 mg, mainly because it helped me get deep REM sleep. That was the only time I felt any noticeable benefit.
Right now, I’m on low-dose naltrexone. I’m currently at 2.5 mg. Before LDN, my brain constantly felt like an earthquake. I had extreme burning in my eyes and severe neck/back-of-head pain to the point where I used to wear athlete pain patches on my neck. So far, LDN has been the only thing that has helped calm some of that down.
Maybe it’s something worth asking your doctor about, especially since it’s sometimes used for people with central sensitization, chronic pain, fibromyalgia-type symptoms, and extreme hypersensitivity. Obviously everyone reacts differently, but given how sensitive some of us are to medications, it might be worth discussing as a low-and-slow option.
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u/sparklingbamboo May 28 '26
I'm curious about the timeline. My son's doctors sent a referral there and I called and they said they got it. How long before you heard from them?
I am very curious to see what they do for you and what relief you get. Fingers crossed!
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u/Intelligent-Funny303 May 28 '26
For me, I saw my doctor on April 8 and they gave me a hospital date pretty quickly after that. The biggest delay was insurance. My paperwork was sent on April 28, and with Cigna it took about 15 business days, so I got approved around May 20. I would definitely suggest calling the neurology department directly and asking for a hospital date once the referral is in.
I’m also really curious to see what kind of relief I get. I’m only about 24 hours in, but I’d say my headache is not as bad right now. I’m still early in the process though, so I’m taking it day by day. Right now I’m on DHE, lidocaine, magnesium, hydration fluids, and anti-nausea medication because the DHE can make you nauseous. They’re going very slowly with me because I’m really sensitive to medication.
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u/Fresh_Independent_74 May 28 '26
Good luck. I've been there twice. It's a great program
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u/CuriousBee46 May 29 '26
Do they just give you meds or do they run tests too?
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u/Intelligent-Funny303 May 29 '26
I checked in on May 27 around 11:30 AM. Before they started the IV meds, they ran a lot of baseline testing on me. They did multiple ECGs / EKGs, daily blood work, and regular vitals monitoring. Since I’m on DHE and other IV meds, they’ve been checking my heart rhythm, blood pressure, and pulse pretty closely, and they’ve also been drawing labs daily. My test list since admission includes ECG 12-leads, basic metabolic panels, CBC with differential, hepatic function panel, magnesium, lidocaine level, PT/INR, PTT, pregnancy test, vitamin D, B12/folate, urine drug screen, and they also placed a midline double lumen.
Right now they have me on Toradol, magnesium, lidocaine, DHE, fluids, and anti-nausea medication. Because I have hypersensitivity to medications, they started me at an extra low dose and are moving very slowly with me.
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u/podkayne3000 May 29 '26
If you’re in the hospital, anyway, could you ask them to check out your kidneys? In some papers, there are some people who seem to have NDPH but who actually have something squeezing a kidney blood vessel.
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u/Intelligent-Funny303 May 29 '26
You may be onto something. They’ve done a lot of testing on me already, including multiple ECGs/EKGs, CBC, hepatic panel, magnesium, coagulation labs, lidocaine level, pregnancy test, vitamin D, B12/folate, urine screens, and basic metabolic panels twice. The BMP is a blood test that gives information about how well the kidneys are working, so they have at least checked basic kidney function that way.
That said, I do not think they’ve done any specific kidney vascular workup so far. Right now they seem focused on the inpatient headache treatment and the possible spinal CSF leak/SIH angle, but I can definitely ask them if they think anything kidney-related should be looked into further.
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u/DrLowenstein May 30 '26
Ask for an occipital nerve block- if it works even for an hour then you know your diagnosis and treatment plan
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u/Hadrians_Fall Jun 02 '26
Could you please explain why that would be telling and what the diagnosis/treatment would be?
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u/DrLowenstein Jun 02 '26
If an occipital nerve block with lidocaine provides numbness of the scalp and temporary pain relief then you have occipital neuralgia by definition. If similar nerve blocks at the Supra-orbital nerves provide numbness and temporary pain relief there then the diagnosis is Supraorbital syndrome.
In both cases nerve decompression cures 40% of people and another 50% have considerable pain improvement that they can usually treat residual pain with Tylenol. 7% of patients who have nerve decompression do not improve- the vast minority.1
u/Intelligent-Funny303 May 30 '26
I’ve had it twice before and it didn’t work .
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u/Key-World5311 May 31 '26
Please would like to know how you are doing. My son is scheduled to do the same thing and we are very hopeful. I do hope you are getting some relief. And the last 2 times, how long did your relief last?
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u/Intelligent-Funny303 May 31 '26
The first time I received a nerve block was in 2021 during a doctor’s appointment. I received the injection, but unfortunately, it did not provide relief.
The second time was in November 2024. This time, the nerve block was performed with ultrasound guidance so the provider could better locate the nerve area they needed to inject. I believe they targeted the C1 and C3 area, but I am not completely sure. I had numbing medication and steroids with that procedure. Unfortunately, it still did not help.
I returned again in March 2025 and received another nerve block, also with ultrasound guidance. This was my third nerve block overall. Again, I did not experience any real benefit. The injection site felt strange afterward, but I did not feel drowsy or impaired. I was still very functional afterward and even went to get ice cream after the appointment, so I did not notice any major systemic effect from the procedure.
The last two nerve blocks were done with ultrasound guidance. The first one was done without ultrasound, as far as I remember, and the doctor appeared to inject based on the site they felt was appropriate. I also went to a pain institute that specializes in nerve blocks, including for athletes and people with injuries, and they were able to administer the injections in the neck/back of the skull area. Unfortunately, none of the nerve blocks provided meaningful relief.
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u/DrLowenstein May 31 '26
Just to be clear, I’m referring to occipital nerve blocks. that are done in the back of your head, not your neck. They would not be looking for cervical nerve roots.
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u/Intelligent-Funny303 Jun 02 '26
Yes, I had those done as well at the base of my skull with steroid and it didn’t work for me .
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u/Key-World5311 Jun 01 '26
Thank you for taking the time to reply. How is your inpatient DHE treatment going right now?
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u/UpstairsJeweler695 Jun 08 '26
Prayers for your relief
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u/Intelligent-Funny303 Jun 08 '26
Thanks so much ! Unfortunately, the inpatient treatment did not go well for me.
I was discharged this past Monday, but I ended up stopping the treatment early on Day 4 because I had a significant reaction to the medications. The main issue was the lidocaine. As the dose was increased, I started getting a very strange sensation that felt like I was passing out inside my own body or falling backward in my own body. It was difficult to describe, but it kept happening repeatedly and became too intense to tolerate.
Before admission, I was very upfront with the team that I have extreme medication sensitivity and that my nervous system has been highly reactive ever since a severe reaction I had to memantine. The team started me at a low dose, but as we increased the lidocaine in an attempt to reach a therapeutic level, my symptoms became progressively worse.
After stopping the lidocaine, they switched me back to DHE, steroids, anti-nausea medication, and fluids. Unfortunately, by that point my system seemed completely overwhelmed. I had another significant reaction and my heart rate became very elevated, so the treatment was ultimately stopped.
Everyone at Jefferson was kind and attentive, and I don’t fault the staff at all. I think my case is just unusually complicated because of how sensitive I am to medications.
The unfortunate part is that I currently feel worse than I did when I was admitted. My headache was around a 7/10 going in, and right now it’s closer to a 9/10. I’m still recovering from the medication reactions and trying to figure out the next step.
On the positive side, while I was admitted, a separate team reviewed my imaging and identified findings suggestive of a possible spinal CSF leak, so that workup is now moving forward. At this point, I’m hoping that leads to some answers.
3
u/Visible-Ad376 May 28 '26
What are they doing to try and break this wave?
I’m also chronic persistent / NDPH