Struggling with Daily Pressure Headaches Post-IIH Diagnosis - Seeking Guidance
I am a 23-year-old female, with a height of 165 cm and weighing under 65 kg. I neither smoke nor drink. My journey began in April 2025, when I started experiencing relentless pressure headaches that persisted for two weeks. The only visual symptoms I encountered were mild—primarily light sensitivity and glare. A lumbar puncture performed during my hospital stay revealed an opening pressure of approximately 35 mmHg, which was subsequently reduced to 21 mmHg. Unfortunately, the sensation of pressure has not dissipated; although it is slightly less intense than when I first sought medical attention. To cope, I rely on 6 to 10 Panadol tablets each day. However, the pain can return abruptly and severely as the effects wear off. Without Panadol, the discomfort would be continuous and intolerable. My general practitioner suspects that I might be suffering from chronic migraines; however, the pain only diminishes with Panadol rather than triptans, and it mirrors the original pressure sensations experienced with my IIH. Although my papilledema has lessened and a recent brain MRI returned normal results, suggesting that the IIH-related symptoms might no longer be the primary source of my pain. I am currently awaiting my first neurology appointment at the end of September. This persistent pain is significantly impacting my daily life, and I lack access to any additional support or advice beyond my somewhat puzzled GP. I am taking 500 mg of Diamox four times a day, along with 50 mg of topiramate daily. Any advice or insights would be greatly appreciated. I feel stuck in a state of uncertainty as I await my September appointment. 😟
Answers (1)
7/14/2025, 1:50:52 PM
OpenHealth AI
I'm really sorry to hear about the struggles you're facing with persistent pressure headaches after your IIH diagnosis. It sounds like you're experiencing a complex situation, but there are steps you can take to help manage your symptoms effectively during this waiting period.
Main Points
- You're currently relying on Panadol, which is not sustainable for long-term management of your symptoms.
- It's important to explore non-pharmacological strategies alongside your medications.
- You can take proactive steps to better manage your headaches while waiting for your neurology appointment.
Explanation
Pressure headaches, especially in the context of IIH (Idiopathic Intracranial Hypertension), can be challenging. After treatment, some symptoms may persist even if certain indicators like papilledema are improving. It's also possible that your headaches might be blending with migraine-type symptoms, though your current medication response isn't typical for migraines.
Reliance on Panadol (or acetaminophen) can lead to rebound headaches when used frequently, complicating the pain management process. It’s essential to find a tailored approach to manage these symptoms effectively.
Actionable Next Steps
-
Review Pain Management Options: Since Panadol isn't providing adequate relief over time, consider asking your doctor about alternative medications specifically for headache management:
- Preventative medications such as amitriptyline or other alternatives might be discussed with your neurologist.
- Ensuring you're taking topiramate as prescribed is important, as it may help prevent headache occurrences.
-
Implement Lifestyle Modifications:
- Hydration: Drink plenty of fluids as dehydration can worsen headaches. Aim for 2-3 liters daily.
- Regular Sleep Schedule: Maintain a consistent sleep routine; aim for 7-8 hours a night.
- Caffeine: Moderate caffeine intake may help reduce headache frequency but avoid excessive consumption, as it can also lead to rebound headaches.
-
Keep a Headache Diary: Track your headaches in detail, including timing, duration, intensity, triggers, and any relief methods used. This will be invaluable for you and your neurologist in determining effective treatment over time.
-
Consider Relaxation Techniques: Stress can exacerbate headaches, so incorporating some relaxation strategies can help:
- Try mindfulness, meditation, or gentle yoga to manage stress levels.
- Simple stretching or massage can relieve tension.
-
Dietary Considerations: Identify and avoid any potential food triggers (e.g., processed foods, aged cheeses, and alcohol), which might be worth monitoring.
Seeking Support
While awaiting your neurology appointment, consider reaching out to online support groups or forums related to IIH and chronic headache management. Connecting with others who understand your situation can provide not only emotional support but also practical insights.
Remember, you are proactive about your health, and waiting for an appointment can feel frustrating. These steps might help you manage your symptoms better as you navigate this path. If anything changes or worsens, particularly in terms of symptoms or new side effects, don’t hesitate to reach out to your healthcare provider sooner.
Related Questions
Understanding Atrial Fibrillation and Thyroid Issues: Variability in Cardioversion Decisions
Hello everyone, I’m reaching out for guidance regarding my mother’s current health situation, and I’d greatly appreciate any shared experiences or thoughts. **My mother's background:** - **Age**: 55 years - **Weight**: Recently dropped to 116 kg from 118 kg in just two days, likely due to diuretics. - **Health history**: Previously an underactive thyroid, undiagnosed and untreated, now presenting as overactive. - **Medications**: Currently taking thyroid medication and a beta-blocker (Rapiblock). **Current health status:** My mother has been hospitalized since Tuesday, experiencing **atrial fibrillation with heart rates exceeding 200** beats per minute due to her thyroid's hyperactivity. - The plan for cardioversion was initially settled on Tuesday. However, the following day, the medical team advised postponing it until her thyroid levels could be stabilized, believing that her heart rate would return to normal once her thyroid condition was managed. - Her **obesity** precludes her from undergoing a transthoracic echocardiogram, and due to her thyroid concerns, she cannot handle contrast dye (this has been a consistent issue for over four years). Therefore, the only feasible option was a **transesophageal echocardiogram (TEE)**, which has yet to be performed. - She has been prescribed various medications including beta-blockers and thyroid treatments in the past. - On Friday, a doctor proposed proceeding with cardioversion; however, the attending senior physician objected. - Today (Saturday), another clinician has expressed a desire to move forward with cardioversion, having initiated a new medication, as the senior physician is unavailable. - **Communication has been unclear**, as we were notified of developments by a nurse rather than the physician in charge, causing confusion and anxiety. - Currently, only a **chest X-ray** is scheduled, and the TEE remains unaddressed. **My inquiries are as follows:** 1. Is it common for medical professionals to have varying opinions and frequently revise medication or treatment plans like cardioversion? 2. Is it safe to conduct cardioversion in the absence of a TEE? I presumed that this was a standard procedure to exclude the presence of blood clots. 3. Is it usual practice to have only a chest X-ray prior to moving ahead with cardioversion? 4. How typical is it for patients or their families to not be directly informed about treatment changes and learn about them through nursing staff instead? I recognize that this cannot substitute for professional medical advice. I’m simply trying to discern whether these circumstances are typical or if we should express our concerns more assertively with the healthcare facility. Thank you for your insights!
28-Year-Old Male Experiencing Scalp Sensations Post-Amitriptyline Treatment
I am a 28-year-old man in generally good health, without any cardiac concerns. Approximately a month ago, I encountered intense pain localized to one side of my head, which was unresponsive to paracetamol. However, a single dose of a migraine treatment provided substantial relief. Following that, I began a regimen of amitriptyline, starting at a nightly dose of 10 to 25 mg. While my head pain has diminished significantly—by about 90 to 95%—I now experience occasional uncomfortable sensations on my scalp. These feelings include pins and needles, a cooling sensation, and some crawling feelings near my hairline and ears. There are fleeting moments where I feel brief throbs lasting a second, but I do not have any persistent headaches. To clarify, I do not experience any of the following: - Nausea - Weakness in my limbs - Numbness - Changes in my vision - Coordination difficulties - Seizures The symptoms I have are transient, shifting around and often intensifying when I become conscious of them or as the day progresses. I would like to know: Is it common to experience these sensations during the recovery stage following episodes of neuralgia or migraine-like discomfort? Additionally, could the amitriptyline potentially be causing these temporary paresthetic sensations? I am seeking some reassurance or advice on what is typically observed during this healing process. Thank you.
7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options
# 7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options ## [7-Month-Old] Identified with Abernethy Malformation (Congenital Portosystemic Shunt) - Treatment Methods? **Age:** 7 months **Gender:** Female **Height:** Age-appropriate **Weight:** Currently 9 kg, was 2.8 kg at birth **Ethnicity:** Asian **Duration of Symptoms:** Present since birth **Location:** Uzbekistan **Pre-existing Health Issues:** Abernethy malformation (congenital portosystemic shunt), liver hemangiomas, chronic jaundice, anemia **Current Treatments:** Supportive management --- ## INITIAL PRESENTATION (June 2025 - July 2025) Our daughter arrived on **June 27, 2025**, presenting with: - Birth weight: **2.8 kg** - Marked jaundice (yellowing of skin and sclera) - Pale or clay-colored stools - **Bilirubin level: 245 μmol/L** (typically <20) An immediate ultrasound indicated multiple liver anomalies, initially thought to be hemangiomas. --- ## FIRST COMPREHENSIVE ASSESSMENT (August 1, 2025 - 1 Month Old) ### Multislice Computed Tomography (MSCT) with 3-Phase Contrast (August 1, 2025): **RESULTS:** - **Portocaval shunt size: 9.9 mm** (blood bypassing the liver into the inferior vena cava) - **Arteriovenous shunt size: 4.4 mm** - **Portal vein size: 6.1 mm** (patent) - **Three nodular cystic lesions** located in the perivascular area, with largest measuring 11.6×20.7 mm, enhancing during the venous phase - Liver features a heterogeneous architecture, exhibiting irregular enhancement - Gallbladder appears elongated and slightly enlarged - Other abdominal organs exhibit normal findings **RADIOLOGIST’S ASSESSMENT:** "Congenital portosystemic shunt indicative of Abernethy malformation; less likely arteriovenous malformation (AVM); cannot dismiss the possibility of localized liver lesions." **ADVICE:** Seek consultations with an abdominal and vascular surgeon. ### Blood Tests (August 1, 2025): **Complete Blood Count:** - WBC: 10.44 × 10⁹/L (normal range) - **RBC: 2.1 × 10¹²/L** (LOW - indicating severe anemia) - **Hemoglobin: 69 g/L** (CRITICALLY LOW; normal is 117-166) - Platelets: 403 × 10⁹/L (elevated) **Biochemistry Analysis:** - Urea: 1.80 mmol/L (normal) - Creatinine: 33.4 μmol/L (normal) - **ALT: >1000 IU/mL** (EXTREMELY HIGH - severe liver dysfunction) --- ## FOLLOW-UP IMAGING (December 16, 2025 - 5.5 Months Old) ### Liver Ultrasound: **RESULTS:** - Right lobe: 64 mm, left lobe: 43 mm - Liver capsule appears irregular and vague - **Parenchyma: heterogeneous, showing 7 hypo-isoechoic nodules** (sizes range from 11.5×10.7 mm to 17.6×15.4 mm) - Capsule features uneven contours - Blood flow noted during Doppler examination - No dilation in intrahepatic bile ducts - **Portal vein: 3.9 mm** (decreased from 6.1 mm - indicating improvement) - Common bile duct: 1.4 mm - Gallbladder: measures 43.7×9.2 mm (pear-shaped, wall thickness 2.0 mm, homogeneous, free of stones) **ULTRASOUND ASSESSMENT:** "Presence of liver volumetric formations (specifically liver hemangiomas)." --- ## LATEST MSCT (February 6, 2026 - 7 Months Old) ### MSCT with 3-Phase Contrast: **FINDINGS:** - Liver remains normal in size, but shows heterogeneous structure with uneven contrast enhancement - **Portocaval shunt: 9.9 mm** (no change, continues to drain directly into the inferior vena cava avoiding liver acinus) - **Arteriovenous shunt: 4.4 mm** (no alteration) - **Three nodular cystic lesions** in perivascular space, maximum size 11.6×20.7 mm, enhancing in the venous phase - **Portal vein: 6.1 mm** (noted during porto-venous phase) - Arteries show no filling abnormalities - Intrahepatic bile ducts remain non-dilated - Gallbladder is elongated and slightly bigger, free from stones - Pancreas: normal - Spleen: measures 66.9×38.5 mm (not enlarged), splenic vein is 3.6 mm - Kidneys: normal placements and structure - No excess fluid detected in the abdominal cavity - No visible changes in lymph nodes **MSCT ANALYSIS:** "Congenital portosystemic shunt indicative of Abernethy malformation, unlikely to be AVM, presence of focal liver lesions cannot be ruled out." **RECOMMENDATION:** Engage with an abdominal and vascular surgeon. --- ## RECENT BLOOD WORK (December 2025 - January 2026) ### Complete Blood Count (January 19, 2026): - WBC: 5.8 × 10⁹/L (SHOWS IMPROVEMENT) - **RBC: 2.93 × 10¹²/L** (IMPROVED but still low) - **Hemoglobin: 72 g/L** (SHOWS IMPROVEMENT but still low) - Platelets: 223 × 10⁹/L (BACK TO NORMAL) - Neutrophils: 30.0% - Lymphocytes: 64.8% - Monocytes: 4.6% ### Biochemistry (January 28, 2026): - Total protein level: 67 g/L (slightly deficient) - Creatinine: 20.7 μmol/L - **Total Bilirubin: 242 μmol/L** (STILL HIGH - unchanged) - **Direct Bilirubin: 142 μmol/L** (VERY HIGH) - **ALT: 50 IU/mL** (DRASTICALLY LOWER from >1000!) --- ## OVERVIEW OF PROGRESS OVER 6 MONTHS | Parameter | August 2025 | January 2026 | Change | |------------------|-------------|---------------|--------------------------| | **Hemoglobin** | 69 g/L | 72 g/L | ↗ Slight improvement | | **RBC** | 2.1 | 2.93 | ↗ Improved | | **ALT** | >1000 | 50 | ✓✓ MAJOR IMPROVEMENT | | **Bilirubin** | 245 | 242 | → Unchanged (still elevated) | | **Portal vein** | 6.1 mm | 3.9 mm (US) | ↗ Decreased | | **Platelets** | 403 | 223 | ↘ Normalized | | **Shunt size** | 9.9 mm | 9.9 mm | → No Change | --- ## CURRENT SITUATION (February 2026 - 7 Months Old) - **Weight:** 9 kg (good growth rate in spite of condition) - **Jaundice:** Continues to be present (yellow skin) - **Stools:** Remain pale/clay-colored - **Development:** Achieving appropriate milestones - **Energy:** Appears to have a good energy level - **Feeding:** Normal appetite --- ## QUESTIONS FOR r/AskDocs We have been informed this is **Type 2 Abernethy malformation** (portal vein present). **Three treatment avenues have been proposed:** ### Option 1: **Endovascular Coil Embolization** (minimally invasive approach) - A catheter is inserted via the leg vein to access the shunt and deploy coils/plugs to close the abnormal vessels - Pros: No surgical incision, minimal discomfort, short hospital stay (2-4 days), no scars, enhanced safety - Duration: 1-2 hours - Recovery: 2-4 weeks for jaundice to show improvement ### Option 2: **Open Surgical Intervention** - An incision in the abdomen to ligate abnormal vessels and redirect blood to the liver - Pros: Direct visualization, effective results - Cons: Surgical scar, longer recovery time (7-14 days in hospital) - Duration: 2-4 hours ### Option 3: **Liver Transplantation** - We have been advised this is not necessary as the portal vein is functional and liver health is improving. --- ## SPECIFIC QUESTIONS TO CONSIDER: 1. **With a functional portal vein (6.1 mm) and improving liver function (ALT normalized), is it advisable to pursue endovascular closure as the preferred treatment?** 2. **Despite ALT levels improving, the bilirubin remains consistently high (242). Should this be a cause for concern? Is there a prospect for it to normalize post shunt closure?** 3. **Are the hemangiomas/nodules (11.6×20.7 mm) linked to the shunt? Will they likely resolve following shunt repair?** 4. **How urgent is the proposed intervention? Is immediate action required, or is there flexibility to wait a few months?** 5. **What complications should we be vigilant for during the waiting period?** 6. **Regarding endovascular closure - what is the average success rate for infants aged 7 months? Are there concerns regarding the shunt size (9.9 mm)?** 7. **The measurement of the portal vein has shown improvement from 6.1 mm to 3.9 mm; should this be perceived as a positive sign or a reason for concern?** 8. **Are there special directives (diet modifications, medications) we should consider while awaiting the procedure?** 9. **Post-procedure, how long should we expect it might take for:** - Normalization of bilirubin levels? - Return of stool color to normal? - Resolution of jaundice? - Regression of hemangiomas? 10. **Can you recommend any specialized centers for pediatric Abernethy malformation treatments? We are located in Uzbekistan but are prepared to travel (to Turkey, Russia, South Korea, etc.)** --- ## ADDITIONAL INFORMATION - No family history of hepatic diseases - Pregnancy and delivery were normal - No additional congenital defects identified - Immunizations up to date - No history of bleeding disorders - No signs indicative of encephalopathy - Child is alert and engaged --- **I can supply actual MSCT images and comprehensive lab reports if they would be of assistance.** We sincerely appreciate any insights you can provide. We are striving to make the most informed decision regarding our daughter’s care and highly value expert medical opinions. **TL;DR:** 7-month-old diagnosed with Abernethy Type 2 malformation (9.9 mm portocaval shunt, patent portal vein). Liver functionality is improving (normalized ALT) while bilirubin remains elevated (242). Evaluating options between endovascular coil embolization and open surgery. Seeking expert advice on optimal treatment strategy and timing.
Battling Chronic Nausea and Vomiting for Over Two Years
For the past two years, I (age 26, female) have been enduring an incredibly challenging health situation. I experience intense nausea daily and find myself vomiting numerous times, with almost nothing providing relief. To provide some background, I’m from West Texas and I currently weigh around 190 pounds, standing at 5’7”. Initially, my weight was about 211 pounds when these symptoms began, and it fluctuates frequently between 190 and 225 pounds. I engage in vaping and consume THC. Previously diagnosed with hypothyroidism, my condition seemingly resolved, according to my healthcare providers. Additionally, I have polycystic ovarian syndrome (PCOS). I have consistently faced irregular bowel movements, with stools that are loose and sometimes appear to have mucus. Compounding my struggles, I've also suffered from migraines. I have had an IUD for over five years, experiencing two insertions of the Kyleena device. In December 2022, my battle with health took a severe turn when I was diagnosed with stage 4 Hodgkin’s Lymphoma, requiring chemotherapy treatment, specifically AVBD (Apologies for not recalling the exact medication names). By July 2023, I had fortunately achieved remission. However, after reaching remission, my vomiting worsened, transforming from primarily white foam to a mixture of 80% bile, any food I attempt to consume, and still white foam. This intense vomiting, accompanied by significant pain in my upper back, escalated to more than eight episodes daily by November 2023. At that time, THC seemed to be the only avenue for me to retain any food. During this tumultuous period, I consulted various doctors who, after confirming I wasn’t pregnant, attributed my symptoms to Cannabinoid Hyperemesis Syndrome (CHS). Immediately, I ceased THC consumption for over six months, yet the vomiting continued unabated. Each time, doctors would prescribe ondansetron, regardless of my claims that it provided no relief. I experimented with various diets recommended by medical professionals, but there were no improvements in my condition. Eventually, I obtained a referral to a gastroenterologist who intended to perform an endoscopy. However, the procedure was prohibitively expensive even with insurance, and thus was never conducted. This doctor also ordered blood tests to rule out several gastrointestinal disorders, such as Crohn's disease, Irritable Bowel Syndrome (IBS), and gluten sensitivity, but all results came back normal. Afterward, I had another appointment with a different gastroenterologist, but the doctor failed to meet with me. Instead, a nurse informed me that the doctor had merely recommended promethazine without conducting any tests or scheduling further visits. When I mentioned the possibility of gallbladder issues, the doctor laughed dismissively at my suggestion. Discussing my situation with my oncologist, he suggested that my heightened sensitivity to food odors stemmed from my chemotherapy experiences while I was working in fast food. While food smells indeed affect me, I'm primarily triggered by medical scents such as rubbing alcohol and cleaning agents. This ongoing ordeal has been overwhelmingly distressing. I now experience episodes of vomiting accompanied by bright red blood, presumably due to a throat tear. When I first encountered this troubling symptom, I consulted a doctor who appeared unfazed and prescribed a promethazine suppository, which does help but makes me extremely drowsy. My nausea persists nearly around the clock, often feeling as if there’s a heaviness in the upper part of my abdomen. I frequent urgent care facilities when my symptoms intensify, only to be met with minimal assistance since this is a chronic issue. Currently, I lack a primary care physician. Whenever I sought one, I encountered skepticism regarding my condition, with some healthcare professionals implying that I was exaggerating my symptoms. Though many physicians who do take my situation seriously seem baffled, I've lost count of the diverse medical experts I've consulted about these ongoing issues. If anyone has insight or suggestions, I would genuinely appreciate it. I can share my latest bloodwork results if that would be helpful—just let me know!
Strange Stomach Sensation Leading to Waking Up
Greetings. I'm a 36-year-old male, standing at 172 centimeters and weighing 90 kilograms. I don't take any medications, nor do I smoke. I've been living with diastasis recti for several years now, and I may also have irritable bowel syndrome (IBS). Additionally, I deal with fatty liver and kidney stones, though I assume these last two conditions are not related to my current concern. Occasionally, I experience a peculiar sensation that jolts me awake; it feels like a quick pulsing in my stomach. I’ve noticed it tends to affect the left side when I’m lying on my left side and the right side when on my right. Remarkably, it can occur even when I’m on my back. This strange feeling often escalates into a surge that fully rouses me. Alongside this, I sometimes feel prickling sensations throughout my body and fleeting lightheadedness. When this sensation disturbs my sleep while I’m turned to my side, shifting onto my back or the opposite side might alleviate it, but not always. In instances where I awaken while lying on my back, I discovered that gently pressing my hands on either side of my stomach can help, as can rising to a sitting or standing position. However, during my last two episodes—one a couple of weeks ago and another tonight—those techniques weren’t effective right away, which made me feel a bit anxious, prompting me to seek advice. Does anyone have insight into what might be going on? By the way, I’ve undergone routine ultrasound examinations of my abdomen by two different physicians during check-ups, both of whom assured me that everything appears normal, including my abdominal aorta and internal organs. They didn’t identify any issues at that time.